"Study demonstrates that 95% of ME/CFS Patients have Anticardiolipin Antibodies, suggesting that ME/CFS may be an autoimmune condition"

A survey of the literature reports ACAs as commonserological markers in many different types of diseases,including viral diseases such as illnesses resulting fromchemical (1) and marine toxin exposure (4,5,6), HIV(7,8) and Epstein-Barr virus (9), hematological cancersincluding CLL and acute myelocytic leukemias, exposureto fungal organisms, malaria, and staphylococcusinfections (10,11), and autoimmune diseases such asmultiple sclerosis, systemic lupus erythematosus, autoimmunehepatitis, and more (2). This study demonstrates that a large percentage of patients clinically diagnosed with CFS have elevated levels of the IgM isotype to CL (95%), suggesting that CFS may be an autoimmune condition.As a possible autoimmune disease, CFS patients maybe treated by suppression of the ACA or by diminishingthe antigen CL in serum. Previous studies have shownthat treatment with monoclonal antibodies to B cellsreduces ACA levels to normal in patients with autoimmunedisease, leading to clinical improvements.

Specifically, Rituximab, a chimeric monoclonal CD20antibody, has been shown to normalize high ACAserum titers of patients with autoimmune systemic lupuserythematosus, rheumatoid arthritis, autoimmunethrombocytopenia, and autoimmune hemolytic anemia.Rituximab may serve as an effective therapeutic agentfor ameliorating the symptoms of CFS (11,13).

Therefore,classification of CFS as an autoimmune disordermay serve to increase the availability of treatmentoptions for patients suffering from the disease.

A study from 2009. Nice find, Dr. Speedy!

Pregnant? Don’t get Vaccinated

A computer scientist at the blog MedAlerts, has collated and graphed the data for us. The chart below shows the total number of spontaneous abortions/stillbirths reported to VAERS per a variety of vaccines.

It is clear from the graph that both the H1N1 vaccine and the Gardasil vaccine have a far greater risk for this outcome than other vaccines. What the graph does not capture is that this is raw data of all adverse events for the time the vaccine has been on the market going back to the start of the database. So as is pointed out by Dr. Rubin at MedAlerts, while the H1N1 vaccine shows a bit less than 3 times as many reports of abortion/stillbirth as the seasonal flu vaccine, the H1N1 vaccine has only been on the market for a year versus 21 years worth of data collection for the regular seasonal flu vaccine. This implies that the H1N1 vaccine is some 60 times more likely to cause a miscarriage than the still relatively unsafe seasonal flu vaccine.

The vaccine with the greatest number of total reported abortions/stillbirths is Gardasil, which has only been on the market for four years. I would speculate whether Gardasil, targeted strongly towards prepubescent girls, and likely not near as widely received as the flu vaccine may even be more dangerous than the H1N1 vaccine.

It should also be pointed out that the most common vaccines a pregnant woman would be at risk of being exposed to would be the influenza vaccines and the Gardasil vaccine.

Got a mail from Alan Light

Alan Light send me a mail response to some ideas I had. Well he dashed  (short, precise and friendly) one of my pet theory. Oh well, he really knows much more than me :-)

I need to digest it first. It is really nice that to have access to such great researchers.

Anyway, his email contained a footer. This was in it:

No virus found in this message.
Checked by AVG
Version: 10.0.1411 / Virus Database: 1522/3957 - Release Date: 10/17/11

Made me smile :-)

The jokes professor Wessely makes

Professor Wessely has many times now made the case in the media that ME patients refuse to accept the psychiatric model of ME because we're scared of the stigma of mental illness. What a joke! I face stigma every day worse than that of someone with a mental illness, because as well as being viewed as just a label, treated with disrespect & ignorance, I am also treated as though my illness in fact doesn't even exist. (Which would not be true even if ME was a psychiatric disorder, since that by definition IS real!) My physical symptoms and disability are downplayed, ignored or disregarded, often completely disbelieved. Everything I say, do, believe, and am, is up for grabs for doctors to pounce upon as a reason why I am not as important as a patient with a real illness and why what I say about my illness, body & life can't be true. I've spent the last 15 years being neglected in a very real way, given little or no treatment, even where tests have proven some physical problem. I am not even given the majority of the tests and treatments recommended by international specialists for my very real illness. In essence I am just left to rot, along with everyone else with this diagnosis. And this isn't just my experience! Hundreds of thousands of ME patients in the UK have had this kind of experience, or much, much worse. Millions worldwide are little better off.

Disservice

"Anyone who says this is a lab contaminant has drawn the wrong conclusion and has done a disservice to the public"
 – Judy Mikovits (via)

Compare to:

"In retrospect, I say I did the disease a disservice. I might have done the patients a disservice, and I might have done the field a disservice."
– Elaine DeFreitas (page 682 "Osler's Web")

Rituximab Caveat

In my practice, rituximab at 375mg/m2 causes hypotension in most patients, about 60% need downward adjustment of their infusion rates and about 25% the hypotension is severe enough to be symptomatic. I would expect the hypotensive reactions to be more severe and frequent at the dose of 500mg/m2 used in the CFS protocol. If the patients signed a proper consent form they would have been warned that hypotension would be a risk, therefore most patients would be aware that they had received rituximab rather than placebo. The physicians who administered the rituximab would have to be adjusting the infusion rate in most patients and would also be aware that they had given the active drug rather than the placebo.

Therefore the statement that the study was double blinded is incorrect; it is not possible to double blind rituximab for the above reasons. Furthermore, the results are based on subjective, "how do I feel" criteria which could be influenced by the patients knowledge that they had received rituximab.

Interesting.

(As a side note: It is sad to see that Jamie always brings up XMRV)

CBT/GET: Misguided if well-meant treatment

The headline reads: 'Research showing ME is a physical disease'. We don't go along with the fashion among some doctors and researchers who tend to denigrate the very concept of a 'physical' disease. Such professionals prefer to emphasise instead that all disease, including ME, is a mixture of the physical and psychological. As I said when I was on the panel at the MEA Question Time in Huddersfield recently: 'Try telling that to someone with a broken leg.' No-one should let academic arguments obscure their common sense.
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has now placed the second poster in our awareness raising series prominently on our website.

The message reads: 'ME is just fatigue, right? WRONG'.

The striking photo features one of our members, tube-fed because she could not at that time eat for herself. We have all read so much nonsense about ME in the press this year. It is time to tell it like it really is and to forward this link far and wide.
See the poster here: http://bit.ly/tt-wrong

The good news is that, after she and her family declined graded exercise treatment and managed her illness carefully, avoiding any treatment 'programme', this little girl has come through the worst of the illness and grown into an independent-minded, academically gifted young woman with a strong sense of justice for children with ME.

How many times do I hear a similar story of improvement through withdrawing from misguided if well-meant treatment?

The problem with the "autoimmune" label

Oh, how I hate the press for their ignorance…

Chronic fatigue syndrome, which affects one in 250 Britons, may be caused by a faulty immune system attacking the body.

That is the problem with the "autoimmune" label: People think "well, if the immune system attacks its own body, then the cause must be a faulty immune system". No. Coeliac is an "autoimmune" disease, yet its cause is gluten (which is found ceral-grains).

That is one part of the problem with journalism: They try to explain things they don't understand. The other part is that people take what is reported in the press at faith value.

And, oh, by the way, the incidence for ME/CFS is closer to one in 200, if not more common. Doctors do underreport, it comes with the territory.

The effects of psychotherapy for adult depression seem to be overestimated considerably because of publication bias

The effects of psychotherapy for adult depression seem to be overestimated considerably because of publication bias. (via)

Always be wary of doctor who too sure of a diagnose – especially when he makes a diagnose in the fields of psychiatry, psychology or the dubious psychosomatic field.

How does ultra-pure water taste?

At the chip plants, the staff comes to regard UPW [ultra-pure water] as just another part of a high-tech manufacturing process. One senior IBM official was stunned when I asked her what UPW tasted like. Despite presiding for years over the water purification process, she not only had never tasted it, it has never even occurred to her to taste it. One of her deputies had, though, and he piped right up. “I stuck my tongue in it,” he said. “It was horrid.”  In fact, super-clean water tastes flat, heavy, and bitter. 

For science! Drinking larger amounts of ultra-pure water would probably leach the minerals from your body as well. So, there you have it.

The advantages of division of labor drive eusocial behavior

The proposed new interpretation of what causes ants and a few other species to become highly social, to the point of intricate specialization and even self-sacrifice, or altruism, is classic Wilson. “The causative agent,” the authors wrote, “is the advantage of a defensible nest.” Eusocial creatures are driven to cooperate not by their relatedness, in other words, but by the advantages that accrue to any group from the division of labor. As natural circumstance forced individuals to interact, certain cooperative traits became advantageous, and proliferated, in a handful of cases.

Rice, Potatoes, Wheat, and Other Plants Interfere with Human Gene Expression

Rice, Potatoes, Wheat, and Other Plants Interfere with Human Gene Expression

It was exactly one year ago today that I first uttered the phrase, “paleo is a logical framework applied to modern humans, not a historical reenactment.”
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Not surprisingly, the research demonstrates proximate effects that were effectively predictable with the paleo framework.

The two relevant components of the basic paleo framework are:

1. Humans are probabilistically less likely to be adapted to foods introduced more recently into the human diet. This applies to the potato, which is indigenous to South America, and was not available to humans in Africa, Asia, Europe, Australia, or myriad island populations, until the Spanish brought them back to Europe in the late 16th century. All of those populations have been consuming potatoes for only 300-400 (I’m being generous with that second number) years.

2. Because they can’t run away or fight back like animals, many plants have evolved chemical defense mechanisms. Because the ultimate goal of evolution is reproduction, and not survival, we can predict that chemical defense mechanisms are likely to be concentrated in the reproductive parts of plants. In many cases, this is the seed. Rice is a seed of a plant, and is therefore probabilistically likely to have chemical defense mechanisms.

Bad Joke

What are hundreds of thousands of people, who are sent home by their doctors with the words: 'You just imagine that'?

Isolated cases.

How reliable is data gathered by doctors?

While these case reports are not in the medical literature I would argue that they are more trustworthy then those written in journals in that, 1) they are not anonymous and 2) they are the exact words of the patient or parents impacted by the adverse event. The government keeps a database of adverse vaccine reactions known as VAERS. One parent had a very succinct critique of this program which I will reproduce.

“The horrible realization is that VAERS is not accurate. Prior to Gardasil, I did not know what VAERS was. When my daughter became ill, I found out about VAERS by research performed on the internet. My daughter’s doctors did not even know what it was and they did not file a report until I filed one myself and told them they were obligated by law to file a report. How can the #’s be accurate if doctors don’t file the reports? I even had to explain what VAERS is. Shouldn’t VAERS and the adverse side effects of vaccines be taught in medical school or shouldn’t the doctors receive periodic newsletters from the CDC explaining VAERS and its importance?

It is the same thing that we have seen in ME/CFS: If you rely on doctors to report something (heck, they are even obligated by the law!), then doctors will underreport it. Doctor won't have the time to write reports, won't take the time, will be skeptical as to a causal relationship, will be skeptical to the significance of the symptoms and attribute it to other 'causes' (It's "the flu", it's "the weather", it's the patient's imagination, etc.)

"My heavens, what stupidity is this – the earth is obviously flat"

My heavens, what stupidity is this. The earth is obviously flat and I see the evidence of the sun rising and setting, rotating around the earth every single day, with my own eyes, what sort of moron would think otherwise. All of the evidence says the heliocentrists are idiots and fools, it is confirmed every day, while these nut jobs from their pathetic little charting (if there were internet flamers in that era) of a few disobedient stars dare rewrite all of cosmology, lunacy. Of course being so far advanced we now know that the earth rotates around the sun and moon, errr, scratch that last part the moon rises and sets like the sun but rotates around the earth, of course. It’s obvious isn’t it, from those few aberrant lights in the night sky? Thinking back on it, wow, what an achievement.

Nice. I always wanted to write that with regards to "common sense" and science.

Hemispherx/Chronix announce results in their CFS DNA-sequencing study

The aim of this recent CFS study was to find signature DNA sequences from patients with CFS compared to healthy controls with respect to their diagnostic predictive value, as well as, to potentially provide new insight into CFS biology. DNA extracted from serum samples of CFS subjects and normal healthy controls was sequenced and compared to the human genome. A total of about 10,000 high quality sequence reads were generated from each serum sample and four genes were identified by Multivariate Regression that separated CFS patients from the normal control group with a c-value of 0.95.

These results support additional studies with a larger CFS cohort using Massively Parallel Sequencing platforms with the aim of reduction to validated clinical assays for the diagnosis and evaluation of CFS and to explore whether the technology can be used to identify how different persons with CFS will respond to Hemispherx's experimental drug Ampligen.

Note: The blood test for CFS is still experimental in nature and has not been evaluated by any regulatory agency. It is currently limited to investigational use.

Previously, Chronix utilized Next Generation Sequencing (NGS) to generate sufficient DNA sequences to provide the statistical power to identify alterations in blood DNA from patients with breast and prostate cancer vs. normal healthy controls.

XMRV is no more

Well, there exists a virus called XMRV, that can not be denied.

But there isn't XMRV in people causing diseases.

No sense in arguing with reality...

Weaker than average placebo effect in ME/CFS

The Placebo Response in the Treatment of Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis
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Results: The pooled placebo response was 19.6% (95% confidence interval, 15.4–23.7), lower than predicted and lower than in some other medical conditions. The meta-regression revealed that intervention type significantly contributed to the heterogeneity of placebo response (p = .03).

Conclusion: In contrast with the conventional wisdom, the placebo response in CFS is low. Psychological-psychiatric interventions were shown to have a lower placebo response, perhaps linked to patient expectations.
(via)

Who would have thought that, huh? "Conventional wisdom" fails again. So conventional wisdom is the opposite to knowledge? I guess this confirms my bias that "psychosomatic medicine" is just "conventional wisdom" – and not science.

(Some) clear words from Jamie Deckoff-Jones on XMRV

Here is the reality and the context for why I write this particular blog entry: My email inbox is filled with so much pain and confusion, as patients try to figure out what the BWG study means to them. I feel it is my obligation to both these patients and the larger community to share my opinions. I think what the BWG results mean is that all the XMRV/HGRV testing done at VIP Dx has been and is now null and void.
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I have watched this whole thing unfold and kept quiet because I hoped that management at the WPI would come to their senses, before it was too late. They have not, so I now feel obligated to share what I know.

Remember, that is the personal opinion of Jamie Deckoff-Jones. But I commend her on her clear words on this. Now we need something official from the WPI. We need to know what is going on. As I have commented:

Being wrong is OK, but we need to know what went wrong.  Nothing is more difficult than orderly reatreat from an unholdable position. – Clausewitz

Jamie writes on about testing at WPI vs. testing at VIP Dx lab:

Keep in mind that Dr. Mikovits works at the WPI research lab, which is a separate lab from the clinical, commercially-oriented VIP Dx lab. She believes that she has reproduced her original work many times and found evidence of infection in the patients who were previously found XMRV positive. But she never found any single patient positive on every date tested by every assay. So there has been an assumption that there were false negatives in the WPI research lab for some time. Another important thing to keep in mind is that WPI routinely used several tests on each sample, whereas VIP Dx used different, more limited testing, on the samples they received, testing that apparently was never truly validated against WPI methods or performed with appropriate controls. I personally don't know why this was the case or how it happened. Obviously the decision to sell a test was a very poor one, hindsight being 20/20. It left the institute with a difficult conflict of interest.
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Now it appears the WPI research program is getting thrown under the bus, but VIP Dx is still up and running, now minus XMRV testing. None of this means that we don't have HGRV's, or that some of the work that came out of the Mikovits-led research lab wasn't correct. What it does mean is that there is no validated test for clinical, commercial use.

I think this is where Jamie is deluding herself – but this is all wobbly believe and hear-say. We need to take it step by step, and we need to find out conclusively what the testing at the WPI was worth and might still be worth. I'm afraid it might not be worth much, but guessing is not good enough and we need to know.

And it means we are now at risk of losing all the gains we've made because of poor managerial decisions.

If there were real research gains, that is.