Special Report - Online activists are silencing us, scientists say Reuters March 2019



"Neither article interviews any of the > 100 scientists & clinicians who rejected the #PACEtrial."

Edit: (Just checked: That's true for the Daily Mail, didn't check if it's true for the Times. The Daily Mail article however links to a video with Dr Shepherd which I think is quite good)

Ironically, the Reuters press release article itself actually quotes one of the private UK ME doctors and signatories of the open letter to the Lancet ("told Reuters", "showed Reuters"). Unfortunately, it's easy to prove that this doctor is quite popular among pwME.

Also, it's not necessarily part of a campaign that diverse media publish an article from a news agency. There are other ingredients that make it a rather satire-like campaign, many of them provided by Sharpe and SW on Twitter, but also by science journals' editors acting embarrassingly clearly in favor of PACE authors.

Edit 2:


Good question.

It all seems to me like just another act of a satiric play that began some years ago, always the same characters showing up, SMC-briefed Kate Kelland (Reuters) and Tom Fielden (BBC) being just two of them. (Fielden seems to have acted only behind the stage this time.)
 
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for tweeters, good link

"Statement from Prof. Ian Lipkin, Director, Center for Infection & Immunity at Columbia University:

Our studies of blood, cerebrospinal fluid, saliva and feces, using state-of-the-art methods that include microbial gene sequencing, metabolomics, proteomics, and immunological profiling, confirm that patients with ME/CFS have biological abnormalities that cannot be characterized as psychosomatic."

particularly if you point out that the 'scientists' like Prof Sharpe and Trudie Chalder mainstay of research method is 'the questionnaire'.
 
Very weak article. First of all, none of those tweets are 'abusive' or threatening. Being rude is not a criminal offence (yet). These 'professors' just want to go back to a time when they could issue their ex cathedra pronouncements with no pushback whatsoever from the masses and no post-publication peer review. This was possible in an age where the establishment controlled all the means of communication. But the era of mass democratisation of access to information and communication is here and that toothpaste isn't going back in the tube no matter how hard the authorities try to clamp down on ordinary people... the internet always finds a way of routing around obstacles.

Then we have SW humble-bragging about being important enough to have his mail x-rayed. Given that he doesn't say he's ever received anything that would have warranted the use of those x-rays I am assuming he hasn't received anything problematic and so his narcissism and paranoia amounts to an admission of one giant waste of police time/resources.

Number of clinical trials going down or researchers moving out of a field is reported as something bad. It doesn't work that way. If you have a bunch of rent-seeking low quality researchers doing repetitive, derivative work that leads nowhere for decades, then pruning them off is a sign of progress in the field. This journalist doesn't know anything about science and should not be writing about topics that are way over their head.

“My goal is to completely discredit the PACE trial,” Tuller told Reuters. “And if they have moved out of the research field, then that’s great,” he said of the CFS/ME researchers he’s targeting. “They shouldn’t be in the field. They shouldn’t be doing research at all.”
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Haha well put sir.
 


It would be a great shame if the charities feel they have to remain silent on this, so good to see some have found a way to speak out, albeit cautiously.

Personally, I'd like to see them take on MS's recent media campaign directly - but I know that's not worked out well in the past.
 
Stewart said:
Michael Sharpe on Twitter:

"Of course you can hold me to account - you can report me to the GMC."

Also Michael Sharpe on Twitter:



"I'm am giving up ME/CFS research because I am fed up of being reported to the GMC."
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Sharpe's framing is telling: it's entirely personal. "You can report me". Nobody cares about you, Michael.

The point he replied to is there is no mechanism to give feedback, especially report harm, to highlight problems with their quack treatments and the research has been found to be fatally flawed yet remains propped up because of political pressure and undue influence. This is a fundamental problem breaking the very premise of scientific research. Refusing the premise of flaws simply does not count as responding to them.

It has nothing to do with them personally and they can't get over that fact, they take it as personal attacks even though we don't care one bit about their personal lives and would respond identically if they were chiropractors or immunologists with a more "biomedical" model that simply did not work.
 
dave30th said:
I could be wrong, but in the end this looks to me more like a speed bump or a flashing red light than a real set-back.
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I'm a little bit more pessimistic than Andy and David.

I was very disappointed that the New York Times and Medscape took over the Kelland article. I wouldn't focus too much on people discussing or commenting on the article. Most viewers only read the title or one extra sentence and will get the impression that ME/CFS means controversy and that there are aggressive patient lobby groups. This might withhold young researchers from joining the field.

I'm afraid these articles will also be used to stifle any criticism from the patient community in the future. Anytime ME/CFS patients want to scrutinize a study or criticize a researcher, these articles can be used to ignore us or to stop a letter to the editor from being published. Any researcher facing criticism might point to the article in the New York and claim that the unjustified aggression he/she's facing has been part of the ME/CFS community for many years.

Finally, I think the whole controversy in the media of ME/CFS activists possibly heckling researchers and being prejudiced or irrational, might prevent newly diagnosed ME/CFS patients from advocating for this disease. It will increase the shame and stigma attached to the label.

I hope that some news media will publish a counternarrative.
 
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Michiel Tack said:
I'm a little bit more pessimistic than Andy and David.

I was very disappointed that the New York Times and Medscape took over the Kelland article. I wouldn't focus too much on people discussing or commenting on the article.
Most viewers only read the title or one extra sentence and will get the impression that ME/CFS means controversy and that there are aggressive patient lobby groups. This might withhold young researchers from joining the field.

I'm afraid these articles will also be used to stifle any criticism from the patient community in the future. Anytime ME/CFS patients want to scrutinize a study or criticize a researcher, these articles can be used to ignore us or to stop a letter to the editor from being published. Any researcher facing criticism might point to the article in the New York and claim that the unjustified aggression he/she's facing has been part of the ME/CFS community for many years.

Finally, I think the whole controversy in the media of ME/CFS activists possibly heckling researchers and being prejudiced or irrational, might prevent newly diagnosed ME/CFS patients from advocating for this disease. It will increase the shame and stigma attached to the label.

I hope that some news media will publish a counternarrative.
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I can understand why you're pessimistic - but the thing is that Sharpe and his allies are still fighting yesterday's battles. Their priority these days shouldn't be stifling the patient community - it should be neutralising the criticisms of other scientists and academics.

I will admit to a sinking feeling when I heard last night that Sharpe was going to be on the BBC this morning - I was worried that it would be a repeat of the 2011 hatchet job. As it was, I felt that Sharpe came across as very smooth - but on the only question that really mattered he was far from convincing.

"I have been driven out of the field by a small but persistent campaign by people who are opposed to scientifically-proven treatments."
"But what about the other scientists who have identified methodological problems with your work?"
"They are part of the anti-science campaign against me."
 
Jonathan Edwards said:
I think part of the problem is that:

Mental illness

and

Mental cause of illness

are completely different concepts.

So whether an illness is treated as 'mental' needs to be understood in either one or other way.

Schizophrenia, punch-drunk syndrome, Alzheimer's and bipolar disorder are all mental illnesses in the sense that they produce mental disturbance. However, none of them are thought to have a 'mental cause'.

A mental cause of an illness is probably a cause that involves the occurrence of thoughts. So post traumatic stress disorder is an illness with a mental cause. Anorexia nervosa might be since there seems no doubt that abnormal thoughts about body image are involved. But then the question is what causes those abnormal thoughts.

The BPS model is a model of ME having a mental cause for continued disability. Not having ME I cannot be sure but I get the strong impression that this is just not plausible as an account of the illness.

But that does not stop ME being a mental illness in the sense of an illness that affects thinking, just as Alzheimer's affects thinking - which it obviously does. So at least part of the time I tend to think that the problem is not that this is an illness that psychiatrists should not try to help with. It is just that the psychiatrists involved at present seem to have got completely the wrong end of the stick - the cause end rather than the effect end.

But then the effect on thinking in ME bears pretty little relation to problems like bipolar disorder and schizophrenia and to be honest psychiatrists are not much good at the 'brain failure' of Alzheimer's, so maybe even enlightened psychiatrists should not be involved.
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I think this is very interesting to think about. I also hope that the problems of the BPS model as a whole come to light and not only for ME. We don't want the same thing happening to the next unexplained disease, it's already happening with chronic pain.

I don't really get the discussion about whether ME is psychological or not? What does that actually mean?

If ME had a mental cause, what would it look like? Would it be fear of exercise? Off course that is the model voor CBT in the PACEtrial, but that's pretty easy to debunk in most mild and moderate patients (as most people do MORE than they can). It would be called a phobia then and you would think psychiatrist would know how to diagnose it?

Do they think we have chronic stress and are therefore ill? That also already exists and it's called a burn-out. Experts in burn-out know that when you rest and stop the stress, the symptoms actually go away. So that doesn't explain it either.

When people say a disease is psychiatric, I think of a brain disease that affects thoughts and behavior. In comparison to a brain disease that affects your body, which would be a neurologic disease.

If people say this is a psychiatric disease, do they think I have some sort of psychosis where I only think I'm ill? That can't be true, because the symptoms are in my body, not my thoughts and/or behavior.

Even if it's my brain that is making me experience illness symptoms, that would be exactly the same as in a normal flu. In a normal flu it's also my brain that is making me feel the illness symptoms.
So isn't a brain disease, which affects your body automatically a neurological disease?
 
Stewart said:
"I have been driven out of the field by a small but persistent campaign by people who are opposed to scientifically-proven treatments."
"But what about the other scientists who have identified methodological problems with your work?"
"They are part of the anti-science campaign against me."
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I haven't listened to it yet. But did he really say this?? That the other scientists are part of the anti-science campaign?
 
dave30th said:
I haven't listened to it yet. But did he really say this?? That the other scientists are part of the anti-science campaign?
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I should have been clearer that I was paraphrasing what he said. He was presented with a quote from the JHP that the PACE results were, at worst, manipulated to produce a positive outcome. In reply he waxed lyrical about the scientific process and then accused the JHP of publishing a campaign against his work.
 
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