Friday, April 11, 2014

"Pathways to Prevention for ME/CFS"

I posted a comment on the CFIDS website regarding "Pathways to Prevention for ME/CFS":
Prevention? Prevention needs some sense of the cause(s), if I am not mistaken.

Yes, there are tentative, speculative causes. But all the so far presented "definitive" causes of ME/CFS share one thing in my eyes: complete lack of credibility. There is no trustworthy research pointing to an cause.

And would prevention look like?

For pathogens, it would be the prevention of the spreading of that pathogen. Problem is, there is no identified pathogen. Horning/Lipkin draw a blank. So against which pathogen do you want to prevent? Problem is, there are no known ones.

Sure, the psych*-doctors know that it is the patient who is to blame. Excuse my sarcasm, but to them it is the patient who is doing something wrong, in his/her wicked ways, as patients are – the patients simply "need" guidance by professional psych*-doctors. So their "prevention" would be some form of "education". Maybe teaching "resilience to fatigue"? Problem is, they think the disease exists in the minds of their patients, but their disease model exists only in the doctor's heads, not in reality.

Or do you want to somehow target groups at risk, and do something? Problem is, there are no identified risk groups. (Again pardon my sarcasm) Sure, the psych*-doctors will tell you it is crazy women who are at risk, but that is not reality – everybody is "at risk".

Did I miss some school of thought here? Oh, maybe the mainstream nutritional disciples will scare us of cholesterol, or saturated fat, or whatever they think is the current bogey man. Problem is, these things aren't the cause either.

So you need some preformed notions about ME/CFS to even consider "prevention". And the problem is that none of those preformed notions about ME/CFS are in any way backed up by robust studies.

It is noble to think about preventing ME/CFS, but unless we know more about the cause(s), any talk about "prevention" is pure fantasy, a waste of resources, and potentially quite harmful to the patient.

Try to find out affected pathways, try to find out cause(s) – and demand loud and clear that any prevention is based on clearly identified pathways and causes. I am afraid that any result of such a conference will be: "Doctors need to teach crazy women how to avoid tormenting their doctors with their problems." They might formulate it with more psych*-medical jargon, so it doesn't sound so offensive.

The CFIDS needs to be highly critical of this – otherwise this could have catastrophic effects on the people with ME/CFS.

Thursday, March 20, 2014

Lipkin And Horning Draw A Blank

From the tweets from the 2014 "Stanford ME/CFS Symposium" I can see that Lipkin focuses on the "microbiome" (aka all the "good" and "bad" bacteria that live in your gut).

While he does not say it explicitly, he found no prevalent infections nor any prevalent immune system problems in people with ME/CFS. Granted, he found some leads with regards to IL-17 and eotoxins – but I am cautious and don't expect that anything will come from this.

And while I think that there is possibly a connection to the gut (and to nutrition!) in many diseases, I however think the reason that Lipkin looks in the gut is because he has exhausted the paths of inquiry that involve the body "proper".

Furthermore Lipkin appears to think that ME/CFS is one "monolithic" disease, so the only place where this one disease must hide (in his view) is in the microbiome in the gut.

I think he is wrong on two accounts:

1. I think there is good evidence that ME/CFS is not one monolithic disease, but instead a set of symptoms that can be caused by several diseases.

2. Lipkin is – as so many in medical research and the medical profession – unaware of the pathogenic potential of some the foods we eat (with dairy, cereal grains and seed oils/PUFA/TFA in my mind being probably the prime suspects).

For me, this is the disenchantment of Lipkin, as I had some hope that he might be able find at least one prevalent disease in people with ME/CFS.

(And BTW some of the things he said on "Autism and GI complains", on "Kawasaki syndrome and candida in the troposphere" and on "Chronic Lyme" are borderline woo. I do not think that Lipkin is a good ally. However if he investigates these things properly, and then clearly announces if he draws a blank, then I am OK with his lines of inquiry. The problem starts when he does not clearly say when he draws a blank…)

Personally I don't expect that Lipkin/Horning will find anything useful in the gut/microbiome – but it is good that they continue their inquiry, if only that they might spread more awareness of the disease or might find something by a lucky coincidence. One never knows…

[Postscript] One other thing is noteworthy: Lipkin found no evidence whatsoever that ME/CFS is caused by HHV-6 / HHV-6B. He found 3 or 4 patients – out of 586(!) – with HHV-6 or HHV-6B. This more or less invalidates the entire argument by the HHV proponents that ME/CFS is caused by an ongoing HHV infection. I think especially the attention given to Montoya (and others) in that regards is not warranted.

[Postscript 2] One more thing: As Lipkin didn't explicitly say it, let me put it in clear words:

Lipkin found no evidence for an ongoing infection in people with ME/CFS.

Clear enough for you?

If ME/CFS is caused* by pathogens (viruses or possibly bacteria), then they are long gone after the initial acute infection**. A case of "hit and run", if you want – the pathogen is gone, the damage stays.

No need to treat a pathogen that is gone, as that will usually do more harm than good. Or as they say at NASA:

Things are never so bad that they can't be made worse.

So the first order of business: Don't make things worse. Anti-viral and anti-bacterial and anti-whatnot medications have a high potential to make things worse – best to use them only if you are really really sure.

So, if there is no pathogen, what can you do? The best one could do is to identify the damage, and try to treat it (e.g. orthostatic intolerance with medication targeting the blood preasure – speak with your doctor!). If there is anything that alleviates symptoms, then doing it might be a good ides. Change nutrition, try a Paleo Diet, try an Eleminaion Diet. But please, stop claiming that phantom ME/CFS viruses, and phantom ME/CFS bacteria, and phantom ME/CFS fungi supposedly hide in the gut of people with ME/CFS, or in their tissues, or god knows where – you are hurting yourself and hurting other people.

PLEASE. STOP. IT.

Please?

--
* There seems however to be evidence to indicate that acute infections can cause ME/CFS in some cases.

** Unless you are one of those rare 1 in a 100 ME/CFS cases were it is clearly established that there is an ongoing infection – and no, "Chronic Lyme" is not a ongoing infection, and neither is "Candida", nor "Chlamydophila pneumoniae" or any other somesuch woo terms being peddled by people who don't know better. These are makebelieve terms that only fool people (including those who doctors who use these terms).

Tuesday, January 28, 2014

The second acne cause: House dust and/or house dust mites?

As I have written before, I have been having problems with acne. And while I traced down milk and dairy (and more specific pasteurized dairy) as the primary cause, my acne still didn't go away fully. I had some suspects, but I found one more I had overlooked so far: House dust and/or house dust mites…

Not sure yet, I will see if this is indeed the cause.

Tuesday, January 14, 2014

Unfinished Blog-Post: A Post-Mortem for Lombardi et al. 2009 - The Response to Comments

A long time ago I started some blog-posts, but never found the time nor energy to finish them. Now I have long lost interest in the matter and will publish them all "as is" – maybe someone will find these raw thoughts helpful.

Unfinished Blog-Post: A Post-Mortem for Lombardi et al. 2009 - The Addendum

A long time ago I started some blog-posts, but never found the time nor energy to finish them. Now I have long lost interest in the matter and will publish them all "as is" – maybe someone will find these raw thoughts helpful.

Unfinished Blog-Posts: Comparison between the results of Lombardi 2009 and the "Addendum"

A long time ago I started some blog-posts, but never found the time nor energy to finish them. Now I have long lost interest in the matter and will publish them all "as is" – maybe someone will find these raw thoughts helpful.

Unfinished Blog-Post: "February 1983: Gallo proposes that AIDS is probably caused by a retrovirus, presumably a variant of HTLV-1 or II"

A long time ago I started some blog-posts, but never found the time nor energy to finish them. Now I have long lost interest in the matter and will publish them all "as is" – maybe someone will find these raw thoughts helpful.

Labels

5-AZA A. Melvin Ramsay Acne Advocacy Alan Light Alternative medicine is an untested danger Ampligen Andrew Wakefield Anecdote Anthony Komaroff Antibiotics Antibodies Anxiety Aphthous Ulcers Apnea Asthma Autism Autoimmune Disease Behçet’s Ben Katz Bertrand Russell Biology Blood sugar Bruce Carruthers Caffeine Calcium Cancer Capitalism Cardiology Carmen Scheibenbogen CBT/GET CDC Celiac Disease Cereal Grains CFIDS Chagas Charité Charles Lapp Christopher Snell Chronix Clinician Coconut Milk Cognition Common Sense and Confirmation Bias Conversion Disorder Coxiella Burnetii Coxsackie Criteria Crohn's Cytokine Daniel Peterson Darwinism David Bell Depression Diabetes Diagnostic Differential Disease Diseases of Affluence DNA DNA Sequencing DSM5 EBV EEG Eggs Elaine DeFreitas Elimination Diet Enterovirus Epstein-Barr ERV Etiology Evolution Exercise Challenge Faecal Transplant Fame and Fraud and Medical Science Fatigue Fatty Acids Fibromyalgia Francis Ruscetti Fructose Gene Expression Genetics Giardia Gordon Broderick Gulf War Illness Gut Microbiome Harvey Alter Health Care System Hemispherx Hemolytic Uremic Syndrome Herpesviridae High Blood Pressure Historic Outbreaks HIV HPV Hyperlipid Ian Hickie Ian Lipkin Immune System Infection Intermittent Fasting It's the environment stupid Jacob Teitelbaum Jamie Deckoff-Jones Jo Nijs John Chia John Coffin John Maddox José Montoya Judy Mikovits Karl Popper Kathleen Light Kenny De Meirleir Lactose Lamb Laszlo Mechtler LCMV Lecture Leonard Jason Leukemia Life Liver Loren Cordain Low Carb Low-Dose Naltrexone (LDN) Luc Montagnier Lucinda Bateman Ludicrous Notions Lumpers and Splitters Lyme Mady Hornig Mark Hasslett Martin Lerner Mary Schweitzer MCS ME/CFS Medical Industry Medicine is not based on anecdotes Michael Maes Migraine Milk and Dairy Mitochondria MMR Money and Fame and Fraud MRI Multiple Chemical Sensitivity Multiple Sclerosis Mutton My Symptoms n-1 Nancy Klimas Narcolepsy Neurodermitis Neuroscience NK-Cell Nocebo NSAID Nutrition Obesity On Nutrition Pain Paleo Parathyroid Pathogen Paul Cheney PCR Pharmaceutical Industry Picornavirus Placebo Polio Post Exertional Malaise POTS/OI/NMH PTSD PUFA Q Fever Quote Rare Disease Research Retrovirus Rheumatoid Arthritis Rituximab RNA Robert Gallo Robert Lustig Robert Silverman Robert Suhadolnik Rosario Trifiletti Sarah Myhill Sarcasm Science Sequencing Seth Roberts Shrinks vs. Medicine Shyh-Ching Lo Simon Wessely Sinusitis Sjögren's Somnolence Sonya Marshall-Gradisnik Speculation Stanislaw Burzynski Statins Stefan Duschek Study Sucrose Sugar Supplements Symptoms T1DM T2DM There is no such thing as Chronic Lyme There is no such thing as HGRV Thyroid Tinitus To Do Toni Bernhard Tourette's Treatment Tuberculosis Vaccine Video Vincent Lombardi Vincent Racaniello Virus Vitamin B Vitamin D VP62 When Evidence Based Medicine Isn't Whooping Cough Wolfgang Lutz WPI XMRV You fail science forever