Blog: Your silence is killing M.E. by Anil van der Zee

Andy

Andy

Retired committee member
With covid-19, we now witness the deadly effects of passivity in crises and the after-effects of the decades of political silencing of the ME community. We are however now also slowly seeing that the negative attention that we got is transforming into a positive one. Scientists and clinicians alike are digging into the science and knowledge that the ME community has been building up over the years.

Fauci himself has also been criticised for the way he has treated ME. So it has come to me as a surprise that he recently openly talked about post-covid syndrome being “highly suggestive” of ME. In Medscape he mentions how this post viral syndrome is “strikingly similar to” ME. This is of course huge that a prominent doctor is talking about a neglected disease like M.E.

Advocacy work with very limited energy resources have resulted in resolutions for more biomedical research into ME being adopted and larger amounts of funding directed into biomedical research. The Netherlands, which was for a long time one of the front runners of the CGT/GET paradigm and also guilty of gaslighting patients to ad nauseum, has with the perseverance of the patient community managed to become a front-runner in moving towards a research program focused solely on biomedical research.

Maybe with the accumulation of all these efforts and events, are we slowly breaking the silence?
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http://anilvanderzee.com/your-silence-is-killing-m-e/
 
Reassessment of some outbreaks of epidemic neuromyasthenia
indicated a very high prevalence of
neurosis in affected individuals. In one of the most
famous such epidemics, occurring among staff of
the Royal Free Hospital in London, England in 1955,
the progression of the outbreak was argued plausibly
to resemble mass hysteria [27, 28].

This was what Straus had to say about ME in his 1988 paper. When challenged about this Fauci is supposed to have sided with Straus. What evidence is there that his views on ME changed, and when and where did the change occur?
 
Wow, I'm also impressed by this blog. It's very well written.

This is a powerful quote:

"The drive of the ME community to improve science has led to advances that will for sure aid the understanding of conditions like covid-19. Our fight against flawed (social) science will protect covid-19 patients who might go on to develop an ME like illness. We might not have been able to “end” a plague of the disease itself. We might however have ended the plague of how post-viral conditions are being viewed by the scientific and medical world. So in my opinion we’ve absolutely revolutionized medicine in our own right."
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The ending is also impressive:

For all those health care professionals, scientists, politicians and government agencies who are aware of the hurt and despair that the health-care system is inflicting on us ME patients, why aren’t you more shocked, horrified and angered by all this avoidable suffering? Why aren’t you more vocal in your criticism of your government? Why aren’t you speaking up?!? What on earth are you waiting for?

The silence is killing M.E.

Your silence is killing me.

Silence = death.

ACT UP NOW!!!
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chrisb said:
I was just trying to make the point, for those who may be less familiar with the background information, that Fauci's professed view that post-covid is highly suggestive of ME should not be taken as offering comfort, unless it can be shown that his views on ME have changed.
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Yes, that had occurred to me too. He may just think post Covid 'fatigue' is psychosomatic, or at least that it has a strong psychological component and there's nothing much wrong biologically.
 
Trish said:
Yes, that had occurred to me too. He may just think post Covid 'fatigue' is psychosomatic, or at least that it has a strong psychological component and there's nothing much wrong biologically.
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Anthony Fauci, the country’s top infectious diseases expert, acknowledged this month that the symptoms in many of these unrecovered patients are “highly suggestive” of myalgic encephalomyelitis, the disabling illness also commonly called chronic fatigue syndrome or ME/CFS. “This is something we really need to seriously look at,” said Fauci.
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https://www.statnews.com/2020/07/21/chronic-fatigue-syndrome-keys-understanding-post-covid-syndrome/

A couple of thoughts:

Asking for proof of a change of heart by Fauci is futile, particularly at this moment in American life, where he serves as a touchstone for science. Admitting he made an error of judgement of this magnitude is, currently, in no one's interest.

Doctors, and the medical profession in general, seldom admit mistakes, partly because they adhere to a way of thinking where mistakes and errors of judgement are subsumed into a progress model where everyone everywhere and always is in good faith, even though the path to this new view is often carpeted with human lives. Properly seen it's all been necessary, have to break a few eggs...

His clumsy attempt to say myalgic encephalomyelitis, as I said in another post, is important, not because he has seen the light, or that he is our friend, or even particularly interested in advancing our interests. It is indicative that the policy at the NIH, finally, has shifted, that it's swimming into view that understanding m.e. is central to understanding what sometimes occurs in the wake of viruses something they've never been interested in.

My pessimism resides in the fact that you can have a genuine change of view but since money is appropriated based on grant requests research remains stranded in the wake of past and current prejudice. So, while you can see change, at least descriptively, occurring in many places, the influence that represents is still fairly limited.

Anil, excellent blog,(sorry to derail)
 
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