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October 27, 2015

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 Mark Vink, MD, Family Physician/GPwSI

As a doctor who has been bedridden with severe ME/CFS for more than a decade I would like Thank You for your exquisite analysis of the situation for people with this debilitating neuro immune disease.

I recently published an article in which I combined my own abnormal blood results with my symptoms to demonstrate why I do not have the power to sit, stand to walk anymore.

Or as Cort said:
Severely ill patients rarely, if ever, show up in studies, let alone exercise studies - so Mark Vink, a doctor, marathoner and a former Dutch national field hockey champion - and now a very severely ill patient - did one on his own. His exercise test - a six yard walk from his bed to the bathroom.

His results were astonishing.

You can read the full article, which is open access, in the Journal of Neurology and Neurobiology, here at:

https://sciforschenonline.org/journals/neurology/JNNB-1-112.php

Peter Kemp

Thank you.
IMO the most extraordinary thing about the PACE Trial and the data it produced is that it conclusively proved by any objective analysis; that the theories of the principal investigators are wrong and their preferred 'treatments' are useless. Treating deconditioning, phobia or aversion could not be more straightforward. If the researchers theories had been correct, participants should have been bouncing back to their former busy lives.

Had they been correct, then treating participants should have been simple and effective and should have resulted in significant improvements compared to the Control Group. Yet the results show that 85% of those that received GET or CBT did not benefit over and above the Control Group. Furthermore, the 15% that were claimed to have improved could remain so ill that they would be no more able-bodied than a typical 75 to 84 year old, though the average age of PACE volunteers was only 38 years.

The only impressive thing about the PACE Trial was the extraordinary spin put on the results, with the assistance of the Science Media Centre, which had the Trial reported in the media as a resounding success. It just goes to prove, it's not what you know, it's who you know.

Chris Welton

Indeed an invigorating piece for the completion of the ultimate jigsaw.

One of the benighted British psychiatrists is actually 'beknighted', dontchaknow !!

SL

The pun was intentional.

cathy hannon

Research is needed so badly for the thousands who suffer&are not believed...more research is the way forward

Mary Schweitzer

Thank you for posting this. To me the most frightening aspect of the long-term neglect of this illness is that, by CDC's own admission, at least 850,000 adult Americans with the disease don't even have a diagnosis. Yet in looking for a places to cut costs in the upcoming budget, the US Senate budget committee initially reduced the CDC's CFS spending to zero (so far we do not know how that will eventually turn out).

NIH spends less than $6 million per year on research on this disease - compared to $145 million for malaria and $41 million on smallpox. NIH has allocated $122 million for multiple sclerosis, which is a comparable illness in severity but only half as prevalent. It is URGENT that this disease be recognized as a critical national threat that must be faced now. New patients come down with it all the time - without diagnosis or treatment, they are doomed to a lifetime of illness. We must do better. This disease is not going to go away by itself.

ME

"A thing of beauty is a ploy forever."

MB

Excellent piece. Thank you for this.

elizabeth Corran

Thank you so much for this

judy wickert

Genetic testing and subsequent supplements put me on the right road to recovery: thru Dr.Amy Yasko,ND,PhD holistichealth.com. I also take Healthy Aging, a supplement dealing with the mitochondria. And I use VieLight 810 re my dementia, ME issues. Viral Pneumonia started me off on this path...probably EBV..

Judy Wickert

A Hefferon

Excellent piece, we are sick and tired of all the lies and corrupt information written about this coniditon. It is a national scandal allowed to happen for too long. The psychiatrists should be prosecuted.

Amy Stamey

I take issue with the opening statement that ME/CFS is an incurable disease. I recovered after nine years of CFS, and have remained sans CFS for 14 years. I can't point to anyone treatment or therapy, rather just becoming extremely health conscious and doing all I could to support my health. Eating healthy, had my amalgam fillings removed which cleared up candida, getting 8+ hours sleep a night, reducing stress, exercising, and taking supplements. It was a lot of baby steps.

jimells

I keep hoping that a hungry young lawyer, maybe even one of your own graduates, will see a potentially profitable opportunity to help a few million patients achieve justice.

If a class-action compliant is ever filed against the "Wessely School" and its corporate sponsors (the disability insurers) I will be standing (well, laying down) in line to sign up.

We are looking at 30 years of fraud, collusion, and corruption between the CDC, NIH, UK health and pension agencies, the insurers, and the "Wessely School". In fact, the record shows that Simon Wessely is thread that ties it all together.

We know it can be done. The tobacco industry lawsuits show us that.

Any takers?

Anonymouse

Yesterday brought us a companion piece to David Tuller's writing, this time by James Coyne:

http://blogs.plos.org/mindthebrain/2015/10/29/uninterpretable-fatal-flaws-in-pace-chronic-fatigue-syndrome-follow-up-study/

Today we saw two more, very different installments on Virology Blog: the first is the PACE trial researchers offering a response to David's criticisms; the second is David's rebuttal of their response.

http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/

http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/

Which is, if anything, so eviscerating that one wonders if the PACE folks don't wish they'd have left well enough alone. It's certainly not as driven by the data and the problems with it (and beyond), but it's clear, concise, and very, very cutting. James Coyne's Twitter feed over the past week or so has been fairly incendiary towards PACE, as well.

https://twitter.com/CoyneoftheRealm

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