Do I Have A Bad Day? Or Am I Getting Ill While Being Ill?

I feel like I got ill, I feel like some virus or some bacteria hit me – in addition to my "unnormal" disease. I feel like someone had run me over with a steamroller. Though, I don't know, it could be just an exceptionally bad day with my unnormal disease – a disease which no doctor wants to have a part of (and those doctors that do want a part of, those I don't trust).

That's the annoying thing, I never know how good or bad I will feel, how much I will be able to do any given day. And I will never know when I feels worse, if that is "normal" business of my unnormal disease, if the unnormal disease is simply acting up – or if I got the flu or something in addition to my unnormal disease. Or if it was caused by something I ate yesterday, or if I did too much yesterday, or if I stayed a bit too long outside in the cold, or whatever.

This sucks.

Spam for fraudulent HIV "cure"

Just wanted to mention, I got this spam from "Gina" for a fraudulent HIV "cure" – whatever you do, keep in mind that these quacks want to take your money.

My name is Gina, i am from Cape Town in South Africa, I was once a prostitute in my area. I got effected with HIV due to the nature of my job, In May 06 2013 i was tested positive to HIV, this is a true life experience. I never taught there's some one who could ever get my HIV-AIDS cured with his healing spell, i have tried almost everything but I couldn't find any solution to my disease. I always spend a lot to buy a HIV drugs from hospital and taking some several medications but no relieve, until one day i was just browsing on the internet when i came across of abuyespelltemple@xx I quickly contacted him, and he asked me some few questions and i did all things he asked me to do, i did not pay him for his service until I was finally cured, only to see that at the very day which he said i will be healed, all the strength that has left me before rush back and i became very strong and healthy. I went to hospital for the final test to the virus and the result shows i am HIV

If see such a spam comment, do not contact them! It is best to delete their spam.

[Update] Well, two spam comments on the same day, probably from some sockpuppet, on how this quack supposedly helped people with spells and holy water:

Am from UK I give thank to a great doctor who help me out of my illness I was very sick I thank god who use this man to help, it started when i travel to Florida for visit there I meet a lady not knowing to me that she HIV positive I really like the lady because she was beautiful I always see her every moment I close my eye I went to tell her how I feel for her but I don’t know if she know that she HIV I went to bed with her I contacted the virus too when I get home for month my doctor come to check on me and he discover that I have HIV he was shock and tell me I was so confused and so surprised to hear that I was taking HIV drug to cure it for good a 2year I decided to look for cure them I meet this post on internet I contacted him for help… well DR. OKORUNDO proving to be a great man and he heal me.. According to him he said is the power of his gods well I thank god am back again if you need cure for your HIV….you can still contact him or his email or number I promise he is 100% he

And this one:

I want to say hello to the world at large, I am very grateful for the good deeds DR. OKORUNDO did for me, I was a HIV patient, everything went bad for me, I couldn’t do things with my friends anymore, I loosed my job, I loosed everything, I was even waiting for death itself, I went searching on the internet I saw many testimonies on how different spell casters helped people in curing their deadly diseases, I collected one spell caster’s email, which dr.okorndo I emailed him and he answered me, I told him all problems, he ask me not to worry, that I will be free from the deadly disease, which I did, he casted the spell, and told me that he will send a holy water to me through courier services, I was surprised, because he did not mention it to me before, I paid for the courier delivery service, I got a holy water, he asked me to drink it which I did and he asked me to go for a medical check-up in a hospital, I went to the hospital I went for a HIV test, I was tested HIV negative, I was

If you contact him, I will guarantee you will loose your money and you will loose what what remains of your health.

Loose Ends And Chasing Ghosts

I might have made some progress, but some loose ends make me feel like I am chasing ghosts.

The good news is, I think I am making progress. In summer this year my health was tiny bit better then half a year before. Now it is again a tiny bit better than in summer. Alas, I do less, so maybe that is the reason why I feel better… And whenever I try to do something I still get worse. But my tolerance for doing stuff is slowly improving (I think, I have no real measure). I did some light work on Friday, and today (Saturday) I felt the work from yesterday, but could still do some more –  after that I felt awful.

One "trick" I found is that when I feel awful after doing some (light) work, I can feel better when I drink water – more water than I would normally drink (e.g. two glasses when I would drink only one). However when I drink too much, I feel sick… Fear not, I found another "trick": After drinking too much water, I need to take some sugar (a teaspoon or two, or a fruit) to feel better again. (and oh, I forgot to mention: I feel immediately better – within a couple of minutes – after I take a dump. I wish I knew if this is some blood pressure thing, or if this is some liver thing, or what.)

Another thing I noticed: When I take a bit of sugar, my nose "cleans up". Usually it feels a bit congested, but after taking a bit of sugar (which has to contain fructose – glucose alone does not do the trick!) my nose clears up and I can better breathe (BTW, funny thing, sometimes an orgasm clears up my nose as well…). However if I take to much sugar my nose "dries up" a bit. Something is wrong here, and I don't know what.

The improvement is so slow though, that it is painful (not literally painful, but every day seems like the last). And, whenever I do a bit more (maybe an hour or two a day), I get worse again.

And while I gained about one kilogram over the past month (or two), I am still eleven kilogram under my March weight. I have been carelessly eating stuff when I am not hungry, and that's the revenge for this.

What seems to unchanged is that my sleep is not a slightest bit restorative – on the contrary, I feel much better before sleep, than compared after a "good night's sleep". Shucks. In the morning my muscles hurt and they are stiff. My brain feels only half awake in the morning. I need to take a strong coffee, take a hot shower and about 2 to 3 hours to feel halfway like a human being.

Unfortunately there are still some loose ends. A couple of months ago I made an experiment of only eating fish, no more pork. During that time I developed some slight acne again. Which got slightly worse after I stopped fish and ate pork again. I even got some aphthous ulcers.

Now it took some time before the acne wound down again, during which time I removed olives, mustard, bananas and sausages from my nutrition.

Yesterday I ate a banana (not completely ripe), fish (smoked mackerel) and olives and got one slight ulcer.

So what did cause my acne/ulcers outbreak over the past months?

• Some weird fish protein / pork protein thingy
• Olives
• Mustard
• Sausages (or rather the casing of sausages)
• Bananas (possibly unripe?)
• Smoked meat/fish
• Food contaminations
• Toothpaste (certain brand)
• Something completely else
• All of the above
• Some of the above
• None of the above
• No external cause

Back to chasing ghosts…

And lest I forget: I have been occasionally eating some bread, and I do have the impression that I feel worse afterwards. The effect isn't too strong (and I could not swear that it is caused by bread), but I feel kind of "dehydrated" and "dry" for half a day to maybe one day.

The War On Cancer

Peter Attia:

… I don’t need to say much about cancer that you don’t already know. You probably know that about one in three Americans will develop cancer in their lifetime, and you probably know that about half of them will succumb to the disease. What you may not know, however, is that we have made virtually no progress in extending survival for patients with metastatic solid organ tumors since the “War on Cancer” was declared over 40 years ago. In other words, when a solid organ tumor (e.g., breast, colon, pancreatic) spreads to distant sites, the likelihood of surviving today is about what it was 40 years ago with rare exceptions. We may extend survival by a few months, but not long-term (i.e., overall) survival.

We screen better today for sure, but subtracting lead-time bias, it’s not clear this extends overall survival. We’ve had success in treating and even curing hematologic cancers (e.g., some forms of leukemia and lymphoma). Certainly testicular cancer patients (especially seminomatous) are better off today and those with GI stromal tumors (GIST), too. Surgical control of cancer is much better today and some local treatments (e.g., specific radiation), too. But for the most part, when a patient has metastatic cancer today, the likelihood of living 10 more years is virtually unchanged from 40 years ago.

…

Nutrition Research: "Dissonant With Scientific Principles"

But by not training mentees in the basics of science and skepticism, the nutrition field has fostered the use of measures that are so profoundly dissonant with scientific principles that they will never yield a definitive conclusion. As such, we now have multiple generations of nutrition researchers who dominate federal nutrition research and the peer review of that work, but lack the critical thinking skills necessary to critique or conduct sound scientific research.

Steve McIntyre has some of the details.

The ME/CFS Zoo Hypothesis

A constant question regarding ME/CFS (and fibromyalgia) goes something like this:

Is it one disease, or is it a "spectrum", or is it multiple (distinct) diseases that look the same?

I that regard: I find the "Blind men and an elephant" parable helpful – and would like to expand it.

First of all, let me recount from the Wikipedia page a slightly modified summary of the parable:

In various versions of the tale, a group of blind men touch an elephant to learn what it is like. Each blind men feels a different part, but only one part, such as the trunk, or an foot, or the tusk.

A Jain version of the story says that six blind men were asked to determine what an elephant looked like by feeling different parts of the elephant's body. The blind man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the ear says the elephant is like a hand fan; the one who feels the belly says the elephant is like a wall; and the one who feels the tusk says the elephant is like a solid pipe.

Afterwards the blind men talk to each other and learn that they are in complete disagreement. Some of the stories differ in how violent the conflict becomes, and how (or if) the conflict among the men and their perspectives is resolved.

In some versions, they stop talking, start listening and collaborate to "see" the full elephant. When a sighted man walks by and sees the entire elephant all at once, they also learn they are blind. While one's subjective experience is true, it may not be the totality of truth.

My impression is that many in the ME/CFS "community" think that most of the studies are equally "true" – I think that is the first mistake. To stay in the parable: Some of the blind men have never touched an elephant (or any other animal, for that matter) and simply make things up. Here you have blind men who describe not an elephant, but maybe an park bench, or an found umbrella, or maybe an object that exists only in their fantasy (and even describing that they suck). Yes Virginia, I'm talking about Lombardi, Mikovits and Ruscetti. There are others. Like those blind men trying to describe the color of the elephant. Somehow, now I have to think of the names Meirleir, Maes and Gerwyn.

And even if you sieve out all the blind men describing inanimate objects (or worse, make-believe objects), you get some who grabbed some random animal in the zoo and tried to described it. Now if they can describe two (or more) of those animals, and the differences between them, and if they do not try to make you believe that they describe the whole animal, I think they are much more trustworthy than those who want to make you believe they describe only an elephant, and that they know the entire elephant.

If you have someone who says "Here I found two animals with distinctly different tusk, one has leather like skin, the others is furry", well then we are on to something. Currently I have seen few people who would fit that bill: Alan Light (et al.), and maybe Julia Newton (come to my mind).

But one thing should be clear, all those harping about how we need better criteria to "sieve out all non-elephants" (to stay within the parable) should know that:
a) Your are an "blind men" yourself
b) You might be an "non-elephant" yourself
c) The studies you trust might describe non-elephants
d) The studies you trust might describe non-elephant animals that are different from you

Yes, better (and more stringent) criteria might be helpful, but what we need are ways to look at "a collection of zoo animals" (parable again), and learn to differentiate them properly, both in a research setting, and in a clinical setting.

"There is a categorical lack of clinical evidence to support the use of statin therapy in primary prevention."

Via Stan the Heretic:

There is a categorical lack of clinical evidence to support the use of statin therapy in primary prevention. Not only is there a dearth of evidence for primary cardiovascular protection, there is ample evidence to show that statins actually augment cardiovascular risk in women, patients with Diabetes Mellitus and in the young. Furthermore statins are associated with triple the risk of coronary artery and aortic artery calcification.

Don't Trust The Authorities

Milgram a fraud?

… In the fifty years since publication of Milgram’s first journal article the obedience research continues to be cited as evidence of an enduring psychological truth: inside all of us is a Nazi concentration camp guard waiting to be called into service. Yet my archival research and examination of primary sources and that of other scholars contradicts this claim.

Milgram himself was privately aware of the methodological weakness of his research and struggled with many of the issues about the validity of experiments and their generalisability beyond the lab. Privately Milgram reflected that his work was more art than science, and described himself as a “hopeful poet.” …

Positive Psychology? Smelling Bull.

Nick Brown Smelled Bull (via)

Return Of The Aphthous Ulcer

So today I woke up with an aphthous ulcer in my lip – bummer. Now I try to backtrack what I did yesterday what might have been different:

• I used a different brand of toothpaste yesterday morning (I have not used that brand for some time now).
• I had a long test, which was a bit stressful (but not overly stressful).
• I increased my sugar intake yesterday afternoon: six cubes of sugar and a banana (both of which I had avoided the weeks before).
• The banana was quite ripe. It was OK, but not quite ripe (the peel was only yellow, not getting black yet).
• In the evening I ate a liverwurst (the brand of liverwurst was fine the last time, and they declared everything to be pork).

Out flies my theory about as dairy being the sole cause of aphthous ulcers… I still have much much more seldom aphthous ulcers than I used to have, so what ever it was, I have reduced it.

So was it the toothpaste, the stress, the sugar, the banana or the liverwurst? Damn, if I knew… At the moment I tend to go with the toothpaste theory, closely followed by the banana. The liverwurst might have been a problem, but I think the stress and the sugar are unrelated (but I am not sure).

Damn, damn, damn.

Migraine Joke

How many people do you need to investigate migraine?

Genome-wide meta-analysis identifies new susceptibility loci for migraine
Verneri Anttila
Bendik S Winsvold
Padhraig Gormley
Tobias Kurth
Francesco Bettella
George McMahon
Mikko Kallela
Rainer Malik
Boukje de Vries
Gisela Terwindt
Sarah E Medland
Unda Todt
Wendy L McArdle
Lydia Quaye
Markku Koiranen
M Arfan Ikram
Terho Lehtimäki
Anine H Stam
Lannie Ligthart
Juho Wedenoja
Ian Dunham
Benjamin M Neale
Priit Palta
Eija Hamalainen
Markus Schürks
Lynda M Rose
Julie E Buring
Paul M Ridker
Stacy Steinberg
Hreinn Stefansson
Finnbogi Jakobsson
Debbie A Lawlor
David M Evans
Susan M Ring
Markus Färkkilä
Ville Artto
Mari A Kaunisto
Tobias Freilinger
Jean Schoenen
Rune R Frants
Nadine Pelzer
Claudia M Weller
Ronald Zielman
Andrew C Heath
Pamela A F Madden
Grant W Montgomery
Nicholas G Martin
Guntram Borck
Hartmut Göbel
Axel Heinze
Katja Heinze-Kuhn
Frances M K Williams
Anna-Liisa Hartikainen
Anneli Pouta
Joyce van den Ende
Andre G Uitterlinden
Albert Hofman
Najaf Amin
Jouke-Jan Hottenga
Jacqueline M Vink
Kauko Heikkilä
Michael Alexander
Bertram Muller-Myhsok
Stefan Schreiber
Thomas Meitinger
Heinz Erich Wichmann
Arpo Aromaa
Johan G Eriksson
Bryan J Traynor
Daniah Trabzuni
North American Brain Expression Consortium UK Brain Expression Consortium Elizabeth Rossin
Kasper Lage
Suzanne B R Jacobs
J Raphael Gibbs
Ewan Birney
Jaakko Kaprio
Brenda W Penninx
Dorret I Boomsma
Cornelia van Duijn
Olli Raitakari
Marjo-Riitta Jarvelin
John-Anker Zwart
Lynn Cherkas
David P Strachan
Christian Kubisch
Michel D Ferrari
Arn M J M van den Maagdenberg
Martin Dichgans
Maija Wessman
George Davey Smith
Kari Stefansson
Mark J Daly
Dale R Nyholt
Daniel I Chasman
Aarno Palotie
for the International Headache Genetics Consortium

I am now migraine free, after having figured out my nutrition. I was able to stop using Ibuprofen – something that was before unthinkable for me.

Will they ever find out? They did "brain tissue expression quantitative trait locus analysis" after all. Should count for something, shouldn't it?

Idiots.

And Nature, that bloody tabloid.

"Something I've been eating is doing bad things to my body."

Adrienne Dellwo:

I'm really not loving this diet. I've been cranky, I've had headaches, and I've caught myself grinding my teeth multiple times. I have cravings that rapid-cycle from one thing to the next. The food I'm eating rarely makes me feel full and satisfied.

But there is a silver lining - my inflammation is way down. I've lost several pounds. I can wear my wedding ring without my finger going numb, and my hair isn't falling out in clumps. My pain is down, especially in my hands, where I've had nerve compression. My hip, which still aches, isn't locking up on me, and I can go down stairs without that painful catch in my knee. I've even ridden my bike a little.

What that tells me is: something I've been eating is doing bad things to my body. …

Does Dairy Cause Cystic Acne?

Cystic acne caused by dairy?

… having suffered with cystic acne all my life, I recently discovered that milk is the cause. It makes sense since I was allergic to milk as a child but didn’t think about the effects it would have in my adulthood. I’ve [quit] drinking or eating anything with dairy and haven’t had a new cyst for 4 months. Prior to the non-dairy diet, I would get a cyst every 2 weeks. Anyway, if you’ve been a long time sufferer, maybe avoiding milk will help you too.

One more:

… a few years ago I decided I’m gonna stop drinking milk, and I WAS drinking only lactose free milk for a while but I read something about milk contributing to hair loss and cysts, so just stopped drinking milk and switched to almond milk (kroger family stores has the best one, closest in consistency and flavor to real milk than any other alternative)… guess what? NO MORE THIGH CYSTS! …

A Cause of Chronic Immune System Activation

You want to know a secret? An overlooked cause of chronic immune system activation?

It's right there on your plate: Nutrition.

Forget about "gut flora disbalance" or somesuch BS. Forget about makebelieve "latent viruses" supposedly hiding somewhere in the tissue (hiding like commies during McCarthy's withhunt). If you want to know what has the potential to activate the immune system, you should look on your plate.

For decades I had acne (and other inflammation of the skin) and it only receded when I reduced dairy. When I increased dairy again, the acne came back. Over the past year  I had to learn that acne can be caused by other (ruminant) animal products like veal, lamb or sheep.

Got milk? Maybe that's the reason you got an activated immune system.

Connecting gut problems with nutrition should be easy, one thinks. So if one has known gut problems, why not think about nutritional causes? And from my experience, I can say that skin tissue (and oral mucosa) can be affected by nutrition – and the skin is probably (considering the path nutrients take through the bloodstream) the furthest away from the gut*. So it is only a small leap to consider that every tissue between the gut and the skin can be affected negatively by nutrition. Right?

There is only one way to find out: Do an elimination diet. (Almost) no doctor will help you that, no "multi-center microbiology deep-sequencing study" will help you with that, and certainly no virus-hunter (real or imaginary) will help you with that.



--
* Unless of course you consider that mathematically the gut wall and the skin are part of the same surface. And that evolutionary the different epithelial tissues might be very closely related anyway.

A Sensible Elimination Diet

A sensible elimination diet:

My elimination diet started yesterday, so it's too soon to know anything. Right now, I'm getting used to the restrictions and figuring out how to handle them while still actually eating.…

Here's the list of foods I can't have for the next 30 days:

• All dairy products,
• All gluten-containing products,
• All processed foods,
• All refined sugar,
• Most sweeteners, including honey, molasses, brown sugar, and corn syrup,
• All nightshade vegetables/fruits (tomatoes, green peppers, potatoes, etc.),
• Corn and corn-containing products,
• Fatty meats, including beef, pork, and veal,
• Alcohol,
• Caffeine,
• Processed foods,
• Vinegar,
• Peanuts and pistachios,
• Eggs,
• Margarine, shortening, and refined oils,
• Strawberries and citrus.

And BTW:

My rheumatologist has been prescribing this diet for years, and she says she's seen a lot of people make remarkable progress with it. One woman with rheumatoid arthritis and fairly severe joint damage not only lowered her pain and inflammation on this diet, the doctor told me, her joints actually began to repair themselves. Another patient went from nearly bedridden to out working in the garden in just a couple of months. She mentioned several other success stories, many with the added benefit of weight loss.

Just When I Lose Interest in the ME/CFS Freak Show…

By now I am convinced that ME/CFS is not a monolithic disease, but a pool of superficially similar looking diseases. Take a large enough group of persons diagnosed with ME/CFS (regardless of which criteria used), then maybe 12% have "disease A", 10% have "disease B", 8% have disease C and so on. And I think that most people who research or write about ME/CFS are naive at best, and idiots at worst (with Light and Snell being the notable positive exceptions). And quite frankly I doubt that anything that comes with the "ME/CFS" label will help me regain my health.

But when an anonymous commenter* pointed me to some links, and I saw one about Lipkin I was intrigued. Lipkin may or may not be onto something – only time will tell. And it looks like some results from the Lipkin/Honig study are in. Unfortunately only one unreliable person has blogged about this (and as is typical for him he mumbles many things together, in order to spread optimism to those poor ME/CFS patients) – so I will have to wait until I find something more solid (like e.g. Research1st).

--
* And to answer: I am not interested in some voodoo "gut treatment". I think the "methylation protocol" is at best wishful thinking, at worst quite expensive and possibly dangerous. I think the ME/CFS forums are cesspools. And no, I don't know who Gerwyn is. And quite frankly I try as best as I can not give a flying hoot about that idiot. Or the rest of the ME/CFS freak show.

Don't Trust The Casing

I have been eating pork and fish lately, no more lamb, no more poultry and what can I say, I had a relative quiet time with regards to acne. But every now and then I got very very weak acne, and now I know why: It's those darn sausages.

And the problem seams not to be what is put inside the sausage, but rather what holds the sausages together. Because, even though the Frankfurters I ate were pork sausages, the casing was sheep. And that was not declared on the ingredient list, only "natural casing" was listed – but the manufacturer confirmed it was sheep when questioned.

Darn, one can not trust those ingredient lists.

I think all animal products from Bovidae (and possibly Ruminantia) are a problem for me. I know that beef/veal/dairy is a problem for me, and I know that lamb is a problem for me. I now know that sheep is a problem as well. I will not touch deer, moose, goat and antelope any time soon, that's for sure.

If this extents to all even-toed ungulates (and therefore Suina are not good for me as well) I will see: I plan to go on a meat-free diet, with fish being the only animal product (been holding this off for months, wanted to do this for long). Let's see where that goes.

A Sad Joke

The conventional wisdom in evidence based medicine seems to be: "The Earth is flat."

And the reaction by the complementary/alternative/naturopath/whatever crowd is: "No, no, no, you got it all wrong, the Earth is hollow."

And the sad joke is: The "flat earthers" have the evidence on their side.

I said it before and I say it again: There was no real progress in medical science in the last five decades, except in a few pockets. Sure, surgery got better. And with CT and MRI we have now wonderful tools. But were is the tangible result of decades of cancer research, decades of molecular-biological research? Why haven't they figured out MS yet? The record for cardiovascular disease is horrible. As well as that for obesity and diabetes. And don't get me started on the lack of knowledge in medical science about evolutionary aspects of nutrition.

A sad joke indeed.

Doctors Who Mislead – Are There Any Other?

"I have apologized for some of the earlier reporting because I think, you know, we've been terribly and systematically misled in this country for some time," Gupta told Piers Morgan on CNN. "And I did part of that misleading."

http://www.usatoday.com/story/news/nation/2013/08/11/sanjay-gupta-marijuana-debate/2636043/

No sweat, Gupta, I expect nothing but false and misleading words from an medical doctor – so do carry on spreading your misleading words.

It's not that I hate science – as a matter of fact, science is the only way to discover the true nature of our reality, and I dearly love science. It is just the scientists…

Most scientists seem to have forgotten that the matter of the game is to find out how reality works, and not to advocate their ill-thought-out biases, and go claiming everywhere that this is "science". (And in the case of marijuana that is true for both sides of the debate – plenty of wishful thinking going around.)

Especially the field of medicine and medical research is a cesspool in my not so humble opinion. You could go an shoot every second medical doctor and shoot every second medical researcher (plus all journalists reporting on medicine), and no ill effect would be noticeable in the general population.

Are Aphthous Ulcers caused by Cereal Grains?

This I have ventured into the unexplored lands of nutrition and disease, I have had almost no more aphthous ulcers. I the last year I had maybe three times:

• In December 2012, when I ate cookies containing grains and egg
• In April 2013, after eating dairy and bread
• Now (August 2013) after eating bread

So the common theme seems to be cereal grains causing my mouth ulcers – not eggs, and not dairy. Finding out what causes my ulcers is more difficult than the cause of my acne: In the case of acne, I get an reaction within 6 to 12 hours, and this happened almost every time. But with ulcers, it is a bit different: when I ate bread and dairy daily, I would go one month, two month, maybe three month between an ulcer outbreak. I have seen a clear reduction after going to eat "low carb" Atkins, but nutrition is so much than just "carbs", so much more I did not know to look out.

Are Migraines Caused By The Liver?

I just had an epiphany:
What if the headache from an migraine is the same thing as the headache from an post-alocohol hangover? What if actually it is a problem in the liver that is causing headaches in both cases?

Liver and Ammonia?

[Update 2013-10-14] I traced the ammonia smell to my use of artificial sweetener – talk about "first do no harm"…

Confusion and lethargy may occur if ammonia levels rise in the blood stream (ammonia is a waste product formed from protein metabolism and requires normal liver cells to remove it)
www.medicinenet.com/liver_disease/page4.htm

Is this the "weird" feeling I have? Increased ammonia in the blood stream? Because the metabolism of fructose (or other things like Ibuprofen) tax the liver too much, so it can no longer properly clear ammonia from the blood stream?

[Update] Now in the summer months I wake up in the morning a bit sweaty. And smelling slightly of ammonia – doh. So it is the liver that is part of the problem.

It seems like my liver has a problem metabolising protein, so I shall reduce the consumption of meat as well. Let's see what a potato, coconut-fat and coffee diet does for me…

The One Where I Find Out That Sugar Is Bad For Me

Well, this episode had to come…  I previously poo-pooed the idea that sugar might be contributing to disease – well, I was wrong.

I radically removed sugar (aka "sucrose", which is half glucose and half fructose) and removed fructose from my diet for a couple of weeks now, but continued to consume dextrose (aka "glucose"). And what do you know, the some problems I had with muscle pain went away (mainly the pain during the day and evening went away – my sleep is still not refreshing, and my muscles are awful in the morning).

Now I reintroduced sugar for a short time (ate some fruits yesterday), and today my muscle problems returned. And with it came the indescribable "weird" feeling.

Huh.

As fructose (and fructose in sucrose!) is metabolised in the liver – and unlike glucose, only in the liver – this would indicate a problem with my liver. Which would tie in with the increased GPT value (aka ALT) I had after eating dairy for 10 days in March 2013.

So liver sub-clinical liver problems can manifest with muscle pain. What do you know.

(How I wish I could go back to 2010 and correct some bad decisions I made made back then in order to battle my ME/CFS. I had to find out all by myself and followed the low-carb idiots, and the Paleo beef idiots, and the ME/CFS pathogen idiots – and got seriously hurt as a reward.)

[Addendum] If I take Ibuprofen (commonly known as "Advil") for migraine/headache, then my migraine goes away, but I get both muscle pain (albeit muted) and similar "weird" feeling (even at "only" 300mg Ibuprofen) – more indication that actually I have a liver problem.

Scheibenbogen, WTF?

Knops (from the Scheibenbogen/Charité group) wrote an promotion – thanks Dr. Speedy for pointing us to it. However, I am underwhelmed:

1. Any explanation involving "oxidative stress" or "nitrosative stress"("oxidativer und/oder nitrosativer Stress") makes me wary. This type of explanation is fashionable here in Germany for some people, but I would not bet my life on it.

2. While they are citing these cellular "stresses" very prominently, the Knops/Scheibenbogen group did *not* themselves test anything in that area. They have no own data whatsoever for this nitro/ROS stress. They cite works of other people – people that I find dubious (to put it mildly).

3. They did not use any healthy controls!!!! They compared the results of their patients against the lab reference ranges!!! Seriously, WTF???? And of course they did not compare it with other diseases. How do these results compare to those from MS patients? Or arthritis? A small group of controls from other diseases would have been interesting. What a wasted chance.

4. Personally (mildly) interesting is the MCHC value (page 31) on the high side of the reference value that they did find (which coincides with my MCHC values that are consistent somewhere around 35.5 to 36). But this is not a result that is in anyway a slam dunk for "us".

5. The values that they report are difficult to reconstruct. They should have used plots comparing results for CFS patients with results from healthy controls. By how much are the MCHC values increased in CFS patients? I don't know, as they don't report it. I would not have accepted a study that makes such important things not clear (but then again nobody cares about what I have to say).

6. The immunology results (CD8, IL2, CD57-/CD8-, CD4, IL5) seem interesting. Whether these results can be reproduced in another group of CFS patients, nobody knows.

7. The same goes for the IG subgroup deficits.

8. The correllation between MCHC and the CD*/IL* results seems *very* interesting. But then again, how does this look for healthy controls? Or other diseases?

Furthermore, I would have added "healthy sedentary controls" (if there is actually such a thing – if someone is sedentary, that person is not healthy IMHO) .

The Paleo Fallback Diet

I was thinking: If I could go back, and start all over with regards to nutrition, what would I do (with what I have learned)? I think I would do (what I would call) a "Paleo Fallback Diet", basically a Paleo based "elimination diet". I think the minimal diet would look something like that:

• Fish (but not shellfish)
• White rice (but not brown rice, nor wild rice)
• Potatoes
• Plantains
• Coconut Fat
• Greens (like green-leaf salad)
• Maybe some tubers or carrots (maybe)
• Salt
• Water

Of course, if someone has known problems with any of that, they should not eat it (and try to find something safe to replace it). But as far as I know, these foods should be "safe" for the majority of people in the world – it should be safe to fall-back to these (and only these) foods for an indefinite time. The only exception might be potatoes (darn, if I knew).

I would try to eat only from the above list, for at least a month. Prepare the foods freshly if possible, and best not to use anything that comes with a ingredient list.

And I would especially remove the following foods from my diet, for at least a month:

• Remove all dairy, beef, veal and lamb
• Remove all cereal grains
• Remove all seed oils (with the sole exception of coconut fat) and remove margarine!
• Remove eggs and chicken
• Remove all other meats and shellfish (except fish)
• Remove all sugar ("sucrose") and fructose (and remove honey, and even go so far and remove all fruits except plantains)
• Remove soy
• Remove beans/lentils/pulse and so on

After I have eaten this diet for a month, I would then go and reintroduce certain foods for a few days at a time. Eat some bread, see what it does, and then remove it again from nutrition, see what that does. Wait a few days, then reintroduce dairy for a few days, see what it does, and then remove it again. And so on. Try pork, then remove again. Then maybe try shellfish, then remove again.

This would still be not a perfect way to find out what health problem is caused by what food, but it would enormously help compared to the blind stumbling that I had to do.

"Simple" Thermodynamics and "Common Sense"

David Berreby – The Obesity Era: (via)

… Moral panic about the depravity of the heavy has seeped into many aspects of life, confusing even the erudite. Earlier this month, for example, the American evolutionary psychologist Geoffrey Miller expressed the zeitgeist in this tweet: ‘Dear obese PhD applicants: if you don’t have the willpower to stop eating carbs, you won’t have the willpower to do a dissertation. #truth.’ Businesses are moving to profit on the supposed weaknesses of their customers. Meanwhile, governments no longer presume that their citizens know what they are doing when they take up a menu or a shopping cart. Yesterday’s fringe notions are becoming today’s rules for living — such as New York City’s recent attempt to ban large-size cups for sugary soft drinks, or Denmark’s short-lived tax surcharge on foods that contain more than 2.3 per cent saturated fat, or Samoa Air’s 2013 ticket policy, in which a passenger’s fare is based on his weight because: ‘You are the master of your air ‘fair’, you decide how much (or how little) your ticket will cost.’

… As the Mayor of New York, Michael Bloomberg, recently put it, defending his proposed ban on large cups for sugary drinks: ‘If you want to lose weight, don’t eat. This is not medicine, it’s thermodynamics. If you take in more than you use, you store it.’ (Got that? It’s not complicated medicine, it’s simple physics, the most sciencey science of all.)

Yet the scientists who study the biochemistry of fat and the epidemiologists who track weight trends are not nearly as unanimous as Bloomberg makes out. In fact, many researchers believe that personal gluttony and laziness cannot be the entire explanation for humanity’s global weight gain. Which means, of course, that they think at least some of the official focus on personal conduct is a waste of time and money. …

It is like the question "Why are some subway cars full of people?" and the answer "Because more people entered the subway cars than left it."

Don't trust any "common sense" explanations with regards to nutrition or health. I now lost 12 kilograms weight in the four month since April 2013. Yes, I eat less – but more importantly I eat no dairy, I eat no cereal grains, I radically reduced the consumption of seed oils and PUFAs (poly unsaturated fatty acids) and I now radically reduced the consumption of sucrose ("sugar") and fructose (to the point that I at the moment even don't eat the supposedly "healthy" fruits). I eat saturated fats from coconut fat, I eat meat, I eat potatoes (preferentially fried) and I eat salad. So fuck you very much Mr. Bloomberg, and fuck you very much Mr. evolutionary psychologist – since when do have animals have to have "willpower" to stay non-obese?

Consider, for example, this troublesome fact, reported in 2010 by the biostatistician David B Allison and his co-authors at the University of Alabama in Birmingham: over the past 20 years or more, as the American people were getting fatter, so were America’s marmosets. As were laboratory macaques, chimpanzees, vervet monkeys and mice, as well as domestic dogs, domestic cats, and domestic and feral rats from both rural and urban areas. In fact, the researchers examined records on those eight species and found that average weight for every one had increased. The marmosets gained an average of nine per cent per decade. Lab mice gained about 11 per cent per decade. Chimps, for some reason, are doing especially badly: their average body weight had risen 35 per cent per decade. Allison, who had been hearing about an unexplained rise in the average weight of lab animals, was nonetheless surprised by the consistency across so many species. ‘Virtually in every population of animals we looked at, that met our criteria, there was the same upward trend,’ he told me.

I say, it is more and more seed oil (supposedly "healthy"), with its high content of PUFAs (as well supposedly "healthy") that is making animals obese (including the human animals).

Some Thoughts On Diseases (And Nutrition)

Just some thoughts I had lingering in the back of my mind and which I want to write down (rather quickly and crudely):

• If an chronic disease has no clearly determined cause, assume nutritional causes.
• To determine if your chronic disease has an nutritional cause, you need to do what is basically an elimination diet – there is no way round that. Probably the most popular such diet is the Paleo Diet, which has the advantage of having lots of recipes out there. Personally I think it is best to Remove evolutionary novel foods from nutrition (e.g. remove milk, remove dairy, remove seed oils, remove wheat, remove cereal grains) and then to see if it helps. You can start small (e.g. only remove milk, or reduce the amount of dairy), and if that helps, then you can try to make the next step (e.g. remove all dairy).
• If gluten-free grains (or lactose-free dairy) helps, consider removing all grains (or dairy) because even these "free" products can contain other substances that can make problems (like lectins in cereal grains or cow-milk protein in dairy) .
• If something helps partially, make sure to remove all foods of similar origin, and see if it helps further. E.g. if removing milk helps, then remove all dairy, and remove beef, and remove veal (consider removing lamb as well!). Or if removing wheat helps, then remove all cereal grains. Or if removing eggs helps, then remove poultry (chicken, turkey, …) as well.
• Once you have removed a food for some time (e.g. a month or two), then consider to do a challenge to see if the symptoms return (e.g. for a couple of days). Make sure you change noting else during that time!
• If you buy food: Milk and cereal grains tend to be in everything.
• With some diseases I suspect that one can get (almost) full remission. With other diseases one might only stop the active disease process and avoid further damage (which might be plenty for some disease).
• You need to test removing foods yourself! Do not trust a lab to find this for you, do not trust a doctor to know what nutritional problems you have, and actually while we are at it: do not trust anybody (not even me). You have to run these nutritional trials yourself, to see what causes the problems you have.

Anecdote: Lactose Messes Up Libido

Just a short anecdote: I recently ran an natural experiment. I wanted to see if removing all fructose from my diet (and therefore all sucrose as well) would have an (hopeful positive) impact on my health. As I need some sweetness in coffee, and as coffee with pure dextrose ("glucose") tastes like dish water, I used some artificial sweetener as well (in tablet form, that my mother had bought for herself).

After maybe a week or two of using this sweetener, with maybe some 6 to 8 tablets a day, I noticed an pathological increase of my libido, something I have not had since I reduced dairy in 2010. What was wrong? What was different? What the hell had I eaten? Of course the sweetener! Duh. Checking the little ingredient list on the bottle, written in that tiny tiny font, what did my eyes see? Lactose.

O.o

I have then exchanged the tablet sweetener (with lactose) for a similar one in liquid form (sans lactose, with a tab bit of fructose). And all is well again (at least considering THAT problem).

Anecdote: Dairy And Beef Causes Somnolence

One more personal anecdote: I was having problems with somnolence (excessive sleepiness during the day) – even caffeine tablets did not help. These problems got better once I reduced the consumption of milk and dairy (during my Atkins diet in November 2010).

But as I was thinking that ghee (clarified butter) was "pure" fat, that this would be a "safe" milk product, I increased the consumption of ghee. At the same time I ate a lot of beef, which I did think back then to be "good". During that time I got more somnolence again (Again and again and again: Always watch your symptoms and don't change too many things at a time!).

During my "10 days milk&dairy reintroduction" in March I again got more massive problems with somnolence again, which subsided again afterwards.

Now that I had removed beef (in December), reduced caffeine to 3-5 cups of coffee a day (and no tablets!) and finally in April replaced ghee with coconut fat * – both of which should have a roughly similar composition of fatty acids – did my somnolence retreat for good.

A lesson for me: After I found out that milk and some forms of dairy are clearly problematic for me, I should have become suspicious of all forms of dairy and suspicious of beef (and veal!), even if I did not see any obvious correlation to my remaining health problems.

In extension: If one thing from a nutrition group does cause clear problems (e.g. some cereal grains), better remove everything from that group (e.g. all cereal grains, even gluten-free) from the diet, to see if it helps. And then reintroduce them again to do a challenge.

So after I learned that clearly veal is a problem for me, that beef might be a problem for, I will try to remove all meat from my diet for at least a week and replace it with fish. I already reduced meat somewhat (and am currently on a rather high-carb and high-fat diet! and continue to loose weight, if only slowly) and then tried going vegetarian, but I got a "strange" hunger that made me feel somewhat "jittery", a hunger that subsided only after I ate some meat. I need animal protein, my body makes that much clear. We'll see what fish instead of meat does.

* I initially replace ghee with palm fat, which has an higher content of PUFAs (poly-unsaturated fatty acids). This increased my hunger for carbs, and sometimes gave me a slightly low blood sugar. Only after I switched to coconut oil – with a low content of PUFAs that is comparable to butter/ghee – did my hunger (or rather problem) decrease to a level I would consider "normal" or "adequate".

Anecdote: Even Gluten-Free Bread Does Cause Unwanted Symptoms

Yesterday evening, my mother made some gluten-free bread. I had not eaten any form of cereal grains in a long time and wanted to try it out. After I had eaten a nice (but not excessive) portion of this gluten-free bread, I started to get some unwanted symptoms:

• First of all within maybe 15 to 20 minutes I started to get (mildly) sweaty, without any apparent cause – it wasn't particularly warm, and I did not do any unusually demanding physical activity which would explain this
• On the same evening, I noticed a very very slight case of heartburn
• Then now, at 4 in the morning I awake (something I had not done in a long time; Now in summer I usually awake at around 7), slightly sweaty, and with a slightly stronger case of heartburn than yesterday

Needless to say, I feel – after that little sleep – more awful than usually.

So this is my interpretation:

1. Whatever the cause, it is not caused by gluten – as the bread was gluten free
2. Whatever the cause, it is not caused by carbs (or starch) – as I have been eating (lots) of potatoes and glucose in the last weeks
3. I have to assume, that the symptoms are the direct result of eating this piece of gluten-free bread

No One Can Be Told

I learned two interesting things today about nutrition – a bit of a red pill moment again.

As Morpheus said:

Unfortunately, no one can be told what the Matrix is. You have to see it for yourself. This is your last chance. After this, there is no turning back. You take the blue pill, the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill, you stay in Wonderland, and I show you how deep the rabbit hole goes. Remember: all I'm offering is the truth. Nothing more.

The first thing I learned: no one can be told what nutritional sensitivities she/he has – they have to see it for themselves, they have to try it out. There are no reliable medical tests, and quite definitly no exhaustive knowledge about what foodstuff causes problems.

Which leads me to the second thing I learned: A food that is fine (or almost fine) for one person, can be awful (health wise) for other people. And conversely, a food that is awful for one person (health wise) can be fine (or almost fine) for other people.

So, if someone has health problems (even health problems that are not commonly associated with nutrition, like e.g. depression), and if this person wants to find out if there is a connection between their health and their nutrition, they have to run personal experiments. Remove dairy, see if it helps. Remove fruits, see if it helps. Remove soy, see if it helps. And so on. Then reintroduce, see if the problems return, and then remove the foodstuff again.

Having said that, I think there are three "main" suspects that one should check out first: 1. Seed oils and PUFA overconsumption. 2. Dairy and pasteurized milk and 3. Grains

(On a personal note: Since removing all dairy – even Ghee – and removing beef/veal, and removing some of the fruits, and further reducing my PUFA intake, I managed to loose 9 kg, about 18 pounds, since March. Initially the pounds came down fast, but now I kind of reached a plateau – I have to really watch out how much I eat.

I now increased carbs again, reduced meat, became ANAL about reducing PUFAs and lost another two to three pounds. I currently eat a diet which consists of potatoes, coconut fat, vegetables, some meat, sometimes rice and sometimes fruit. Low PUFA, normal to high SAT fat, low to normal protein, normal to low carbs. No seed oils, no dairy/milk, no beef/veal, no lamb, no grains, no soy, no eggs. I have the impression that when I eat less meat, that I feel better, so I am considering reducing meat further, maybe have some vegetarian days. Unlike "full" fasting days, this should be something I could manage.)

Peer Review – Not Worth The Paper

Amazing:

The present investigation was an attempt to study the peer-review process directly, in the natural setting of actual journal referee evaluations of submitted manuscripts. As test materials we selected 12 already published research articles by investigators from prestigious and highly productive American psychology departments, one article from each of 12 highly regarded and widely read American psychology journals with high rejection rates (80%) and nonblind refereeing practices.

With fictitious names and institutions substituted for the original ones (e.g., Tri-Valley Center for Human Potential), the altered manuscripts were formally resubmitted to the journals that had originally refereed and published them 18 to 32 months earlier. Of the sample of 38 editors and reviewers, only three (8%) detected the resubmissions. This result allowed nine of the 12 articles to continue through the review process to receive an actual evaluation: eight of the nine were rejected. Sixteen of the 18 referees (89%) recommended against publication and the editors concurred. The grounds for rejection were in many cases described as “serious methodological flaws.” A number of possible interpretations of these data are reviewed and evaluated.

(via WUWT)

I'm Healthy! (Says The Health Insurance)

My friendly health insurance has written me to inform me that I am – contrary to the assertion of my doctor, and without them having ever seen or contacted me – not afflicted by any disease or illness. Cured by health insurance, it seems! What a marvellous wonder! If a health insurance (unlike doctors) can make people healthy, we should do away with all doctors all together, and simply rely on health insurances to make people health with their some written words.

Same as Pluto, which doesn't care if call it a planet or a dwarf planet, my state of health is unfortunately wholeheartedly unimpressed and unmoved by the assertion from my health insurance.

I for one am intensely grateful for this humble lesson of sophistic philosophy inflicted instilled on me by my health insurance – truly if they cure people so easily, they must sleep like babies at night. As an atheist, I say "god bless them!" to that.

The Tabloids: Nature and Science

"Clark" has this to report:

When I review for Nature (not climate science), I find about half of the reviewers (we get to see all the reviews) do a superficial review. When this happens, they are typically reviewing how ‘significant’ the work is, not how scientifically sound it is. Interestingly, the journals a step down from Science and Nature have on average much more rigorous and consistent reviews.

One thing that is definitely more true of Nature and Science than any other journal I’ve reviewed for is that the editor will override a critical review if the lead author is prominent enough. The sections editors for both journals will go to scientific meetings in their areas to scout out the ‘hottest’ findings.

The tabloids, mainly interested in the hottest latest biggest bang that sells – science and reality be damned.

Atopic Dermatitis ("Neurodermitis") Caused By Dairy and Eggs?

Another chronic skin condition which is possibly caused by (pasteurized) milk and dairy: Atopic Dermatitis ("Neurodermitis").

The German weekly "Der Spiegel" had this to report in August 2011 (translation mine):

… After Nina Meier's odyssey through doctors offices and many treatments, the turn came with a few words: "Abstain from cow's milk and eggs," advised a general practitioner. "I said to myself, shit, I'll simply try it," says Meier. "It can't get any worse." For one week the symptoms got worse - but then came the turning point. "I could rub off my skin like scabs, underneath new skin came to light. After the old skin had gradually peeled off, it was fine."

Since then she has never been in treatment for their eczema again. With regards to dermatologists she is now skeptical. Nina Meier says she had trusted doctors too much and "ignored nutrition during the search for the cause, because the doctors said nutrition did not play a role". Meanwhile, she can tolerate even a little bit of cow's milk or egg. "And even if my body reacts, I won't get no stressed anymore. Because I now know the cause." …

http://www.spiegel.de/panorama/gesellschaft/jahrelange-fehltherapie-gefangen-in-der-eigenen-haut-a-780722.html

The entire article in "Der Spiegel" is a truly horror story of her various treatments by "evidence based" medical industry – at least it has an happy end for her. What about the countless others who are stuck in this ordeal?

So after Acne, Aphthous Ulcers, Behçet's and Psoriasis, I can add this to my growing list. Why is it the skin, that is the "target"? What is the common mechanism here? I'm sure it will be fascinating to read the mechanism, once medical science will find it out in a couple of decades… I sure hope I live that long.

Et tu, Mutton?

So in addition to cow products (especially dairy and veal), it seems that lamb does at well cause Acne/Behçet's like symptoms for me.

Tough look.

Interesting was that veal caused much more problems than beef, and that lamb is on the same order as veal. Something is different in the meat from those young animals.

If other bovid animals are the same for me? Seems like the entire family of Bovidae might be bad for me – must be some shared protein or something…

90% Of Preclinical Cancer Research Is Not Reproducable

Oh my:

In their Comment article 'Raise standards for preclinical cancer research', C. Glenn Begley and Lee Ellis (Nature 483, 531–533; 2012) refer to scientists at Amgen who were able to reproduce findings in only 11% of 53 published papers. Several correspondents have asked for details of these studies, which were not provided in the article.

The Amgen scientists approached the papers' original authors to discuss findings and sometimes borrowed materials to repeat the experiments. In some cases, those authors required them to sign an agreement that they would not disclose their findings about specific papers. Begley and Ellis were therefore not free to identify the irreproducible papers — a fact that the Comment should have mentioned.

Nature, like most journals, requires authors of research papers to make their data available on request. In this less formal Comment, we chose not to enforce this requirement so that Begley and Ellis could abide by the legal agreements.

The scientists at Amgen could not have implemented their study had they reserved the right to reveal the outcome for individual papers. The Comment highlights important systemic problems in preclinical cancer research, which we felt appropriate to communicate to our readers, even though the authors could not disclose the studies in question.

Cochrane: No Health Benefits By Reducing Saturated Fat

Via That Paleo Guy:

There are no clear health benefits of replacing saturated fats with starchy foods (reducing the total amount of fat we eat).

Oh my.

Clearly the people at Cochrane just don't know how to look for the "proper" evidence. After all, haven't we be told for decades that Saturated Fat is THE bogey man? What's next? That they tell us that statins don't work?

Lu·di·crous No·tions: Calories In = Calories Out

lu·di·crous

(Adjective)
So foolish, unreasonable, or out of place as to be amusing.

Synonyms
ridiculous - laughable - absurd - funny - comical

no·tions

(Noun, plural of no·tion)
1. A conception of or belief about something.
2. A vague awareness or understanding of the nature of something.

Synonyms
haberdashery - dry goods

The "Calories In = Calories Out" hypothesis is based on the assumption that an healthy human body has no mechanisms for regulating energy uptake and energy expenditure.

What a ludicrous notion.

Well, for starters there is "hunger" and "satiety", which clearly regulate energy uptake.

Then there is the "the urge to go out and do something" (for lack of a better word) and "fatigue", which clearly regulate how much physical activity you do.

And these are only two of the high level manifestations of regulation mechanisms that are most "visible" therefore on the top of my mind. If you look you will certainly find mechanisms on various levels, like in the gut, or even in the cells – the neat insulin and insulin resistance thingy comes to my mind.

But this is of course only true if you use not the wrong fuel for your machine human body (wrong food = most of the evolutionary novel food), and only if those mechanisms are not broken. Once you start using the wrong fuel and things start to break down, all bets are off. Fuck up your insulin sensitivity by using the wrong fuel? Congrats, you just put yourself on the path to obesity and diabetes…

Eat beef, butter and egg, help cure TB?

Dr. Briffa on an interesting experiment:

… while I was researching this post I came across an interesting human study in which some attempt was made to assess the role of cholesterol in immunity in humans [3].

This study took 21 individuals who had confirmed infection with tuberculosis (TB). All of the individuals were treated with standard TB medication (four antibiotics taken in combination) over a period of 8 weeks.

Of the 21 participants, 10 were given a cholesterol-rich diet (800 mg of cholesterol a day – about the amount of cholesterol found in 5 medium-sized eggs). The rest of the study participants were to eat a diet which contained 250 mg of cholesterol each day.

After two weeks of treatment, 80 per cent of those eating a high-cholesterol diet were free of TB infection, compared to only 9 per cent of the others. This difference was statistically significant. The authors of the study concluded that:

“A cholesterol-rich diet accelerated the sterilization rate of sputum cultures in pulmonary tuberculosis patients, suggesting that cholesterol should be used as a complementary measure in antitubercular treatment.”

The findings support this conclusion, but it should be borne in mind that the benefits from the diet may not have come from additional dietary cholesterol per se. The cholesterol came via enrichment of the diet with foods such as butter, beef liver and egg yolk. It’s possible, therefore, that the benefits came from other nutritional elements found in these foods, say. The authors of this study acknowledge this possibility.

On Nutrition: The "Calories In = Calories Out" Fallacy

Many people who have thought deeply about nutrition, obesity (and other health problems) will proclaim that it is clearly that "Calories In = Calories Out". They mean that if you eat more ("calories in") than you spend on physical activity ("calories out"), then you gain weight. To loose weight, they proclaim to increase physical activity and decrease food consumption.

And it has some logic to it.

But it is utter bollocks, with no personal knowledge of the problem, and it is putting the cart before the horse.

Before I changed my nutrition, I had problems with hunger. Hunger, hunger, hunger. Murderous, ravenous, hunger.

After I changed my diet to Lutz/Aktins Diet (and now more to a Paleo Diet) my hunger became what it is supposed to be: Information that my body needs food.

So I can say that clearly and unequivocally the problems I had with my hunger were caused by what I ate, which in turn caused me to eat more.

My diet was making me hungry.

Now, how is someone who is hungry supposed to eat less and exercise more?

As I said, utter bollocks.

(And it was not that my change in diet curbed my appetite – the problem was too much hunger, not too much appetite. I still enjoy very much what I eat – it's just so that I eat until I'm satiated, usually twice a day. And then I don't overeat, because like I did with the foods I used to eat. Somehow it is very difficult, if not impossible to overeat on meat, potatoes and salad, versus for example pasta.)

"Safety And Efficency"

For all those who think that the FDA will help solve ME/CFS, that the pharmaceutical industry will help solve ME/CFS, that "we, the patients" should lobby the FDA and doctors to help the pharmaceutical industry:
You are deluded.



BBC Panorama - "Paxil Study 329"


(Via 1 Boring Old Man)

Translational Medicine Has Failed

1 Boring Old Man (emphasis mine):

One reason that I suggest you read the whole article is that in his thinking, the perspectives of the pharmaceutical industry, psychiatry, and the NIMH are discussed as if they are the same thing. For example, he discusses academic research and pharmaceutical research as if they are in synergy with different strengths and weaknesses, an unbroken chain:
…
Here’s the thing about that argument – I can’t think of any examples. The drugs that have characterized the post-DSM-III era are all me-too drugs developed by pharma. What the academics have done is sign on to the industry’s papers as KOLs, involve themselves as sites for drug trials, and traveled around on speaker’s bureaus. If the academics are doing what he described, I missed it. Dr. Hyman, Fibiger, and Insel should be in a better position than I am to know about such things – but I think that this scheme, at least over the last quarter century, is more their shared delusion fantasy than some hard reality.

So while it seems a cynical thing to say, I can’t think of any accomplishments by the Translational Medicine era to mention other than to produce a lot of articles and a few new journals. So how could it be stalled? It never took flight in the first place except as a monotonous rhetorical device and a name for a bunch of centers that haven’t produced very much. The Translational Medicine rallying cry "from bench to bedside" has lacked in productivity from the bench side of the equation.

It seems "Translational Medicine" is nothing but a fancy buzzword to get funds for research, and to hide the fact by how much medical science has been stalled in the last couple of decades…

Anecdote: Remove Dairy, Remove Brain Fog

Another one for the list:

I feel great. I actually feel as if there’s nothing wrong with me at this point in time. Nothing hurts, my brain is functioning adequately, my mood is euthymic, I’m never hungry, I have acceptable energy levels. Occasional mild anxiety/irritability but kava kava takes care of that (thank you Woo).

Was a stressful week at work. I was like “so what, let’s deal with this shit in a stepwise fashion” and handled it just fine.

This is a very unusual occurrence in the life of Sid, that nothing is hurting or broken. Is it possible I’ve been poisoning myself with dairy all these years? I haven’t felt this good since I first went VLC two years ago. In hindsight, I wasn’t eating that much dairy at the start because I wanted to lose weight as rapidly as possible and we all know cheese is stalling.

My brain works again. I don’t have horrible brain fog and the feeling that brain is functioning at 20% capacity.

(emphasis mine)

It's been only a week, so one will have to wait, I'll guess. But it looks promising.

Anecdote: Paleo helps for Fibromyalgia

Robb Wolf has the details.

Idiots

Funny thing, as I googled something else I stumbled about a commentator on a blog accusing me of basically being "anti-science", "wittering on about XMRV”, and in essence by saying that my topic would be "medical oppression" that I am an "Mikovits shill" – I beg to differ. I tried to collect as much about what was wrong with the XMRV disaster as was possible for me (cf. the sidebar on the right, titled: XMRV/"HGRV" Post-Mortem).

It would be really funny if it wasn't in the context of conspiracy theories (and self declared rational "pro-science" people trying to dispel conspiracy theories), that this straw man was raised. If they really would try to first look before they attack something, they might be able to actually learn something – you know, the scientific method. Instead they attack straw man, presumably because it makes them feel better, or something – don't know, haven't got a doctor in confirmation bias psychology.

Oh well, idiots abound – the reason why I state my opinion and go, it simply makes no sense to discuss with such people.

And I for one – seeing such idiots – am fully confident that science, and especially anything to do with medical science, is unable to clean up their house, these fine scientists are so unable to even see what problems they have. With people like these, I get misanthropic urges and want to advise them to consume more seed oils, in order to speed up the necessary paradigm change.

On Nutrition: The "Healthy Food" Paradigm Is Wrong

We all hear and talk about (supposed) "healthy" foods versus (supposed) "unhealthy" foods. Now I think this blinds us to reality. I think talking of "healthy" foods leads to two mistakes:

1. We think that we can offset consumption of "unhealthy" foods with consumption of "healthy" foods
2. We think that the more "healthier" food we eat, that the more "healthier" we get.

Now if we define as "unhealthy" food as some food that causes disease (by containing a disease causing agent), say through interference with the immune system or intereference with the endocrine system (so practically an low-level poison) then no amount of "healthy" food will offset that disease causing mechanism.

If we define "healthy" food as an food containing essential nutrients (water, proteins, fats, carbohydrates, minerals, vitamins, and so on), and only nutrients (no disease causing agents), then we will see that overeating such "healthy" food will not make us more healthy. In fact, for most foods constituents we have a certain range that our body needs and is able to regulate. The mechanisms with which the body regulates this are hunger and taste.

For the most basic food constituent – water – we will get problems if we consume too little and get problems if consume too much water. And the same goes for everything, from salt to meat, from vegetables to tubers. A healthy individual, with foods from his/her environment of evolution, will choose those foods (and then in the "right" amount) to stay healthy. No animal needs to be fed "healthy" food to stay healthy, no animal needs to be told to not overeat, and no animal needs to be told to exercise (I just need to look at our dog to see how much he likes to run), if it is in its natural environment (or something that is close enough).

Conversly: If an food is not present in the natural environment of an animal, then it has the potential to cause disease. And the same goes for the human animal.

Marvellous

David Healy:

Companies don’t engage in conspiracies, we are being told, they are masters of the cock-up, and if given a choice of feet to shoot themselves in will opt for both feet.

Truly marvellous.

More Animal Fat & Less Seed Oils = Longevity!

Stan the Heretic has the details:

1. New study on the topics of mono-unsaturated and saturated versus polyunsaturated fats:

"Lipidomics of Familial Longevity.", by Gonzalez-Covarrubias V, et al.
Aging Cell. 2013 Mar 2. doi: 10.1111/acel.12064. [Epub ahead of print]

Quote:

In addition, the longevity-associated lipid profile was characterized by a higher ratio of monounsaturated (MUFA) over polyunsaturated (PUFA) lipid species suggesting that female offspring have a plasma lipidome less prone to oxidative stress. Ether PC and SM species were identified as novel longevity markers in females, independent of total triglycerides levels. Several longevity-associated lipids correlated with a lower risk of hypertension and diabetes in the Leiden Longevity Study cohort.

2. Longevity marker = MUFA/PUFA ratio in cellullar membranes:

"Fatty acid profile of erythrocyte membranes as possible biomarker of longevity.", Puca AA, et al., Rejuvenation Res. 2008 Feb;11(1):63-72.

Quote:

Erythrocyte membranes from nonagenarian offspring had significantly higher content of C16:1 n-7, trans C18:1 n-9,[mono-unsaturated] and total trans-fatty acids, and reduced content of C18:2 n-6 and C20:4 n-6 [polyunsaturated fats].

(comments in brackets added by me)
 

It Is The PUFA Overconsumption, Not The n-6/n-3 Ratio, Stupid!

Science – do an experiment, find out things:

Metabolic markers in Ossabaw pigs fed high fat diets enriched in regular or low α-linolenic acid soy oil

Ramesh B Potu, Hang Lu, Olayiwola Adeola and Kolapo M Ajuwon*

Abstract

Background
Soy oil is a major vegetable oil consumed in the US. A recently developed soybean variety produces oil with a lower concentration of α-linolenic acid, hence a higher (n-6)/(n-3) ratio, than regular soy oil. The study was conducted to determine the metabolic impact of the low α-linolenic acid containing soy oil.
Methods

Ossabaw pigs were fed diets supplemented with either 13% regular soybean oil (SBO), or 13% of the low α-linolenic soybean oil (LLO) or a control diet (CON) without extra oil supplementation, for 8 weeks.

Results
Serum and adipose tissue α-linolenic acid concentration was higher in pigs fed the SBO diet than those on the CON and LLO diets. In the serum, the concentration of saturated fatty acids (SFA) was lower in the LLO group than in CON and SBO groups polyunsaturated fatty acid (PUFA) concentration was higher in the LLO group compared to CON and SBO groups. Glucose, insulin, triglycerides and LDL-cholesterol were higher in pigs fed the SBO diet than those fed the CON and LLO diets. HDL-cholesterol was lower in pigs on the SBO diet than those on the CON and LLO diets. Pigs fed SBO and LLO diets had lower CRP concentration than those on the CON diet. Adipose tissue expression of Interleukin 6 (IL-6) was higher in the SBO and LLO diets than the CON. Expression of ECM genes, COLVIA and fibronectin, was significantly reduced in the SBO diet relative to the CON and LLO diets whereas expression of inflammation-related genes, cluster of differentiation 68 (CD68) and monocyte chemoattractant protein 1 (MCP-1), was not different across treatments.

Conclusions
Results suggest that lowering the content of α-linolenic acid in the context of a high fat diet could lead to mitigation of development of hyperinsulinemia and dyslipidemia without significant effects on adipose tissue inflammation.

For those of you who don't know right of the back of their heads, α-linolenic acid is an Omega-3 fatty acid (n-3). So a lower consumption of it makes the n-6/n-3 ratio higher – with a higher n-6/n-3 ratio usually considered (erroneously) to be the main problems with seed oils. Yet a lower consumption of only this fatty acid decreases the absolute amount of PUFAs consumed – and that seems to be beneficial (if you are an mammal).

Let me put this in other words: Lower PUFA consumption (even Omega-3!), means better health. 

If you are not an mammal, or if your livelihood depends on selling PUFA supplements in the form of fish oil or seed oil (I'm looking at you USDA, ADA and AHA), then go ahead and advertise an increased PUFA consumption. I just hope that in everybody's interest that you die of natural causes before people start to pick up pitchforks.

If Pharma made cars…

David Healy:

If Pharma made cars..

Companies are legally obliged to answer the question “Can cars kill?” with a “Yes”. They can usually evade this by answering instead the question “Will this car kill me?” or “Did it kill him?” with a “No – absolutely not – if things went wrong it was the Dr’s fault”. But ultimately they depend on their professors (who are carefully managed independent contractors under no legal obligation) to deliver the message “Cars Cannot Kill”.

If Philip Morris made drugs..

If Philip Morris made medicines, all available drugs would come with prominent Black Box warnings that this product can kill consistent with the traditional medical view that Every Drug is a Poison, and the Art of Medicine lies in finding the right dose.

There would be a ban on all advertising including Direct to Consumer Adverts. The use of drugs for children would be severely restricted, and exceptional rather than common.

As company products are available over-the-counter rather than on prescription-only, doctors would be openly skeptical of the claimed benefits and would fully support ongoing research to demonstrate the risks. Somewhat more puritanically perhaps some doctors might be expected to attempt to get Philip Morris sponsorship of university activities banned.
…

The Strange Case Of Postpartum Psychoses

Interesting, disease that get worse, diseases that vanish. David Healy:

… when we set about entering North West Wales records from the asylum in 1896 to compare with admissions in 1996, something more startling became apparent – we admit 15 times more people with serious mental illness now, and compulsorily detain 3 times more people (Healy et al 2001). This prompted a quixotic adventure – why not enter all records from North West Wales between 1875 and 1924 and build a modern database covering admissions from 1994 to 2010?

This was quixotic because no-one wanted to fund us. Grant-giving bodies in history were not able to see the value in quantifying records or in having modern data. Modern epidemiologists could not see the value in historical records. So over 15 years and without support we put together easily the largest body of historical epidemiology in existence – we had no competition, no-one else thought this made sense.

…
Hergest was the first of these general hospital units to open but within 3 years of opening, the mother-and-baby unit closed. There were no cases. The Ablett mother and baby unit had just opened up and this is where Cora went (see Cora’s Story)– and going there may have partly caused her loss of life. All 3 mother-and-baby units have now closed.

Our historical and contemporary databases bring this out perfectly. De novo onset postpartum psychoses have vanished – the manic-depressive type remains (see Tschinkel et al 2007). These are not disorders you can treat in the community. They are the most high risk in all psychiatry.

But when we came to report the findings we were in for a surprise. No-one it seems wanted to hear about a disorder vanishing – not the postpartum experts whose careers depend on it and are still busy portraying it as commoner than ever. Not the health service managers whom one might have thought would have an interest because of the budgetary implications. Nor the researchers you might have thought would be interested in the implications for theories of mental illness. Not the historians specializing in postpartum psychoses or women’s mental health. It was difficult to get published.

Psychiatry Kills – Just Say No

David Healy:

Patients with psychosis, just as they were 100 years ago, are now 4 times more likely to be dead after 5 years of treatment than the rest of us. Patients with schizophrenia are 11 times more likely to be dead – this is much worse than 100 years ago.

Patients with schizophrenia are 10 times more likely to be dead at the end of the first year of treatment than they were 100 years ago. There is no other illness in medicine where such a statement could be made.

Death in the early years of schizophrenia does not come from heart attacks or strokes – it comes from suicide. In their first year of treatment, patients with schizophrenia are over a hundred times more likely to commit suicide than the rest of us.

This is shocking. When I have written about the social function of psychology, I seriously underestimated what harm these psycho*s from the psychiatry department are doing.

Drugs To Take, Drugs To Avoid?

I was thinking in general what I would take and what I wouldn't take with regards to pharmaceuticals. There are a few (hypothetical) situations were I would definitely take pharmaceuticals/medications, vaccines and treatments in general:

• Anti-retrovirals, when faced with an persistent (and clearly identified) infection that causes problems
• Same with antibiotics for bacterial infections
• Same with anti-fungals for fungal infections
• Depending on the cancer – and carefully considering the options – I would be willing to take anti-cancer
• I will take any recommended vaccines against deadly child disease like the usual suspects (MMR, Polio, and the like)
• I would take vaccines against "new" diseases if there is an outbreak (or real risk of an outbreak) in my country, and if the disease has severe health outcomes (e.g. SARS)
• I would take insulin if I had type 1 diabetes (T1DM)

On the other hand, there a few instances where I would definitely not take stuff from pharma or other kinds of treatments:

• I will not take heart disease or vascular medication, especially "preventive" disasters like statins (I'm already fatigued from dairy, I don't need pharma to help with that. And anyway what is wrong with trying out Paleo?)
• I will not take any medicals against diabetes, hypertension, obesity or the like (do Paleo instead, duh!)
• I will not take vaccines against the latest hyped virus (e.g. a repeat of the bird flu disaster)
• I will not take anti-depressives (cf. David Healy)

Furthermore I would try to avoid some forms of surgery (e.g. prostate cancer surgery, which seems to be a result of overhyping prostate cancer – not every "cancer" poses a danger). As a child I was subjected to a unnecessary tonsillectomy which by all means did more harm than good – were I a parent today, I would say no to such surgeries (and in addition the doctor suggesting this would run the risk of needing surgery himself).

But then there quite a few "gray areas". The influenza vaccine? If I knew.

That all got me thinking, would it possible to have a sort of guidance for this? Well, I came up with this, were I would more readly trust pharma:

• The disease needs to have clearly defined adverse outcomes (e.g. like HIV/AIDS), so doctors can not substitute the reality of a disease with their narrative
• The disease has to affect clearly many who are diagnosed with it, and not be some "risk number"
• The drug has to have clearly visible efficiency (e.g. like insulin for T1DM), that does not does not rely on statistical analysis to show efficiency (e.g. definitely not like statins)

So if it is a disease that clearly kills or maims many, and if the treatment does not have to rely on statistical manipulations analysis to show that it does something, then yes, I would take that treatment. In all other cases I'd be careful. Patient discretion is advised.

When Patients Do Lobby-Work For Pharma

David Healy:

… Quite innocently some decades ago a network was set up by Silvio Garattini among others to investigate rare diseases. This later gave rise to Eurordis, an organization to speak on behalf of patients with rare diseases.

An organization of patients and by patients and for patients sounds like a wonderful thing but far from being a sanetocracy it has turned out to be an insanetocracy.

As it happens as of 2011 Eurordis took funds from 38 different pharmaceutical companies. These only amounted however to 22% of their income. Financial conflicts are not really the issue – they could survive without the money. It’s something else that keeps them tied to the Corporation. This is the patient group for whom pharmaceutical solutions are a lifeline. They are more committed to the interests of the pharmaceutical industry than are any of the employees of any of the pharmaceutical companies.

They can be absolutely depended upon to read the runes right and come out with a strong industry position, making it possible for industry representatives to sound relatively accommodating to others in contrast …

The ME/CFS community should take notice – especially those lobbying for Ampligen – not to become unpaid pharma shills.

I Guess "Case Studies" and Anecdotes *CAN* Be Usefull Afterall

1 Boring Old Man:

The scheme boxed above [about RCTs, randomized controlled trials], while initiated as a protective maneuver, is actually designed to detect smaller differences – differences that might not even be apparent without the statistical rigor described. One would hardly need more than my one case of terminal congestive heart failure treated with Ethacrinic Acid to know that drug was a powerhouse diuretic – dangerously powerful. The same is true of Digitalis, Insulin, and Prednisone. They don’t work statistically. They just work. The same would be true of Thorazine which is closer to a sledge-hammer than something subtle requiring statistical proof. The issue with all of these drugs is about their safety, not their efficacy. So the coming of the clinical trial technology greatly expanded the ability to detect much more subtle levels of efficacy.

What frustrates me is that medical science (in the form of pharma-trials) is chasing ever smaller effect sizes (Statins, anyone?) while at the same time ignoring what could be gained be removing evolutionary novel foods from nutrition – something like the Paleo Diet, that "just worked" for me. It did not work "statistically", but it "just worked", just like flipping a switch.

Why can't they take MS patients (for example) and put them on elimination diets, where you remove one component from the diet and see what it does? Have one arm of the study where you remove dairy, one arm where you remove grains, one arm where you remove dairy and grains, and so on – there are other possibilities. Or do this with Behçet's and dairy?

I feel like medical science is stuck, unable to ask the right questions anymore, unable to question what is right and what is wrong with all that knowledge they have gathered. The only way to get themselves "unstuck" would to question everything. Are (whole) grains actually healthy? Is dairy actually healthy? Is an increased consumption of PUFAs actually healthy? If not, for which groups of patients with what diseases? Or are there even problems with these foods that affect everybody negatively?

Until the medical science starts questioning whether the foundation of nutrition is really what the medical mainstream thinks it is, until then medical science will remain stuck.

A Diagnosis Is For The Patient, Not For The Doctor

1 Boring Old Man:

… The hostility towards psychiatrists about diagnostic labeling is actually in sympathy to the mentally ill who can be actually harmed by being diagnosed – in all kinds of ways. Saying a person has a DSM diagnosis isn’t like coding appendicitis – it may make a person uninsurable or unemployable for life. That’s a big hurt. And there are other subtle consequences. These days, there’s a big suspicion that diagnostic inflation is partially motivated by people drumming up business. With the DSM-5 diagnostic inflation, that’s hard to refute.

In this reaction to the reaction Dr. Pies makes what I consider a weak point – that doctors need to make diagnoses. Of course they do, but not in the Managed Care/DSM-5 way it’s done these days. I didn’t deal with insurance companies as a practitioner and was on no panels. When patients wanted to file insurance themselves, I producing bills with the diagnosis [ICD-9-CM] and session [CPT] codes. And I often saw it important to discuss this topic with the naive, as informed consent [do no harm has lots of meanings]. Diagnosis is something one does for a patient, not to or with a patient. Our diagnoses are more in the range of opinion than anyone would like to admit, at least the ones used for outpatients.

Stephen Ralph on Psychiatry, Behçet's, ME/CFS and Misdiagnosis

The achilles heel of liaison psychiatry

Stephen Ralph DCR(D) Retired.

30th March 2013

Hello there,

In recent years I have been considering the reliability of the whole “CFS/ME” diagnostic process.

From personal experience I have encountered numerous doctors who failed to possess the detailed specialist knowledge they needed to make a diagnosis of Behçet’s disease at both GP and specialist level.

From personal experience I have learned that standard blood tests or even CT/MRI scans or indeed other diagnostic tests such as endoscopy can and do fail to detect a complex clinical disease present in a patient.

I have no doubt that there is a diagnostic black hole between the insufficient knowledge of the doctor and pathologies that are not detectable by the basic tests they choose to request which produce negative results they then choose to rely on.

The diagnoses of “CFS/ME” and now Somatic Symptom Disorder have in my view been deployed by liaison psychiatry to exploit that black hole.

Once a diagnosis has been made, that diagnosis is presumed to be accurate by subsequent doctors but in reality there is no standard of diagnosis from one doctor to another which means that the whole diagnostic system – especially for complex clinical presentations – is a total lottery.

The system to challenge a given diagnosis has not been changed in decades.

In the UK a patient has a right to ask for a 2nd opinion but there is no guarantee that the doctor who gives a 2nd opinion will have sufficient knowledge to correctly assess a complex clinical presentation where the usual round of simple tests come back negative.

And, having been given a first opinion of “CFS/ME”; the doctor who considers that patient for a 2nd opinion already has a subjective view of what could be wrong with that patient because they have been re-referred by a GP who will give a medical history that may lean towards a CFS/ME diagnosis because the GP has insufficient knowledge to write an accurate 2nd opinion referral listing all the relevant symptoms that could add up to a rare disease such as Behçet’s disease.

In my own case as an example, my GP had no appreciation that my episode of Epididymitis was relevant to a possible case of Behçet’s and so this issue was not referred to when I was sent to another out of area doctor who formed that 2nd opinion.

With regards to “CFS/ME” a GP or a psychiatrist or a general rheumatologist will give the patient a diagnosis based upon the repeated reporting of a set of “invisible” symptoms over a period of months.

At present, “invisible” symptoms are being ascribed as “medically unexplained” or as a sign of somatisation.

The doctors who make these diagnoses are not specialists in rare and complex diseases such as Behçet’s disease where there is a significant crossover of “invisible” symptoms.

In the case of Behçet’s disease the bulk of Behçet’s research is focused upon those who show all the physical signs yet the majority of those who have Behçet’s do not have to show those physical signs and indeed patients with Behçet’s may show few or no visible symptoms at an outpatient examination.

There is in fact a research black hole representing the majority of Behçet’s patients who do not have all the obvious signs of the disease which in turn misinforms those who rely upon such research to inform them about other potential cases.

In short, the diagnostic system presently in place is stacked heavily against the patient.

Having thought about this for a considerable period of time I have come to the conclusion that the pyramid built by liaison psychiatry that fuels their involvement in “CFS/ME” revolves around a simple foundation assumption that a “CFS/ME” diagnosis handed to a patient must be the correct diagnosis.

If a GP or a psychiatrist carries out tests in conjunction with an immunologist or a rheumatologist; a set of negative test results is all that GP/psychiatrist/rheumatologist needs to give a “CFS/ME” diagnosis.

If that diagnosis has been handed to a patient by doctors who have little or no knowledge of complex sero-negative clinical presentations relating to rare medical diseases then there is a significant risk that the diagnosis he or she is giving their patient is in fact the wrong diagnosis.

As people reading this will know, I was subjected to a medical misdiagnosis by a number of doctor’s including GP’s and specialists.

The number of doctors involved went into double figures over a period of 12 years in total.

Over that period, my many individual symptoms were wrongly ascribed to conditions other than Behçet’s disease but in the end when all those symptoms were put together and compared to the correct diagnostic criteria for Behçet’s disease; a doctor finally looked at the evidence and came to the conclusion that I had been misdiagnosed and that I did in fact have Behçet’s disease.

In recent months I have asked pretty well all the liaison psychiatrists in the UK if they have encountered cases of Behçet’s disease passing through their out-patient clinics and none of them has replied that they had.

Professor Sir Simon Wessely for example told me that he was no Behçet’s specialist and that he would have to phone a colleague who was. Professor Wessely did not know if he had seen cases of Behçet’s pass through his clinic wrongly diagnosed as “CFS/ME”.

I recently e.mailed Professor Wessely to ask him about the outcome of his enquiries that were aided by one of his medical students but in spite of a rapid reply to my previous sequence of e.mails; Professor Sir Simon Wessely has not replied to my query regarding his findings.

I sincerely believe that I have homed in upon the Achilles heel of liaison psychiatry and their dominance of “medically unexplained” CFS/ME or indeed their latest diagnosis of Somatic Symptom Disorder.

It is my view from the evidence that liaison psychiatry; by providing doctors with the diagnostic option of CFS/ME and SSD have been responsible for the dumbing down of the clinical diagnostic process within our NHS and indeed around the world.

It is my view from the evidence that liaison psychiatry has made the potential for medical misdiagnosis acceptable practice within the medical profession as a whole.

Instead of considering rare sero-negative auto-immune disease explanations for cases of what end up as CFS/ME, a doctor now has an easy pathway to give a benign diagnosis of CFS/ME on the grounds that their set of negative test results together with a certain set of “invisible” symptoms means that the condition they are looking at is “medically unexplained” or an example of somatised symptom disorder.

Once medically misdiagnosed, the patient is disqualified from being in receipt of medications and therapies that would have been prescribed had that patient been correctly diagnosed in the first instance.

Disqualification of access to treatment will lead to that patient suffering considerably yet the doctors concerned will not recognise the severity of that patients suffering because that suffering will be put into the wrong context by that medical misdiagnosis.

I have known a case of Behçet’s disease where a patient was wrongly diagnosed as having “CFS/ME” for more than a decade and only had that misdiagnosis overturned when they suffered ocular micro-embolisms that caused permanent blindness in one eye and partial blindness in the other eye.

Away from Behçet’s we know of patients who suffered “diagnostic overshadowing” that lead to the late diagnosis of cancer and a rare heart condition.

The symptoms of cancer and the complex heart pathology were fatal in both situations and in both examples, the symptoms of neurological cancer and the heart pathology were almost certainly wrongly ascribed to the “invisible” symptoms of “CFS/ME”.

As far as the medical profession is concerned, a medical misdiagnosis or a medically missed diagnosis are considered as being “unfortunate”.

For the patient, a medical misdiagnosis or a medically missed diagnosis have profound and serious consequences and outcomes.

None of the doctors involved in making or perpetuating a medical misdiagnosis are subsequently held to account for what they have done to those patients.

In my own case, once I had been re-diagnosed I was treated as though I had simply failed back to the bottom of the pack.

There was no process of clinical education in that no investigation took place and no doctor involved was alerted to their poor clinical opinions that lead to me being medically misdiagnosed.

In short, it is my view that the clinical diagnostic process is in fact seriously flawed.

Patient’s are at risk from the medical profession at GP and specialist level.

In particular patients are at risk from an insufficient level of expertise used to make a complex diagnosis based on negative test results and a history of “invisible” physical symptoms.

Patients who present with a history of “invisible” symptoms and a set of negative routine test results are no longer referred to a super-specialist for the objective consideration of a set of relatively rare sero-negative medical diseases.

Instead, patients are given a benign diagnosis of “CFS/ME”; a diagnosis that by virtue of its own “somatisation” description – created by liaison psychiatry - is then incredibly hard or indeed impossible to overcome.

The present system seriously needs to be challenged and changed so that the patient has a fairer chance of being correctly diagnosed in the first instance and not medically misdiagnosed by inadequately qualified members of the medical profession.

The question is – how do we go about making a powerful effective challenge that effects such a change?

If we do nothing then nothing will change.

The medical profession have proven themselves happy to maintain the status quo.

As far as liaison psychiatry is concerned, it is imperative that the present system of a flawed diagnostic process stays exactly the same as it is today.

As far as immunology or rheumatology are concerned, they surely do not want their out-patient departments packed with patients who have discovered that they have been medically misdiagnosed.

A flawed diagnostic process fuels the creation of a base of “heterogeneous” patients who are subsequently involved in Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET).

Those diagnosed as having “CFS/ME” are fodder for the exclusive “closed shop” self reinforcing research carried out by liaison psychiatry and no other parts of the medical profession.

One could argue that a totally unknown number of patients who are presently medically misdiagnosed with “CFS/ME” are in fact adding credence to the views of liaison psychiatry because a misdiagnosed patient will have a set of self perpetuating and untreated disabling symptoms (fueled by an unrecognised disease process) that the patient is unable to “cast off” or rid themselves of from a course of CBT or GET.

Those patients will reliably keep on reporting “somatised” “invisible” symptoms not because they have any mental impairment but because an auto-immune disease is producing those symptoms.

Such an unknown number of medically misdiagnosed patients can be accused by liaison psychiatry of being so neurotic or so somatised that they are unable to be “cured” by CBT.

Such misdiagnosed patients will be readily available year upon year for future “peer reviewed” research studies that go to reinforcing the validity of Somatised Symptom Disorder or “CFS/ME” using medically misdiagnosed patients to helpfully legitimise those artificial mental health labels.

Such misdiagnosed patients become – in the eyes of liaison psychiatry – desperately in need of even more psychiatric interventions and their sincere professional “help”.

Such patients become so firmly shunted into the somatisation cul-de-sac that they may never have their real diagnosis established unless they suffer a loss of sight or a pulmonary embolism or another “visible” crisis event such as a brain tumour or a fatal heart condition.

However, a pyramid can be reduced to rubble if the foundations are seen and recognised to be rotten.

Once it is realised that the pyramid is built on rotten foundations then when those foundations are condemned and removed, that pyramid will be reduced to rubble.

Sincerely,

Stephen Ralph DCR(D) Retired (diagnostic radiography)

See also…

http://www.meactionuk.org.uk/systemic-vasculitis-and-myalgic-encephalomyelitis.htm