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

[rvallee]

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."

Anti-science scientists.
Anti-psychology psychologists.
Anti-treatment patients.

Damn, what a cast of characters we are.

 

[rvallee]

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

Ultimately it boils down to the difference between whether we can do something ourselves to improve our situations.

This is the main issue with CBT and GET. It's not a pill or a treatment delivered by a specialist. It's a process we have to undertake ourselves and as such failure to recover becomes our own. Whatever "specialists" are involved merely act as cheerleaders, providing nothing more than reassurance and encouragement.

No one expects someone with MS to spontaneously recover (although they do get their share of "have you tried yoya??!!") by thought alone or that exercise will cure your cancer or Crohn's disease (although there is no shortage of such claims, they are not enabled by medical institutions, rather the opposite).

This is not an issue of what the cause is and how much the mind plays into, rather it's about who is responsible for treating the problem: us or medical professionals. Framed as "happy thoughts and exercise will cure you", the direct and explicit implication is that anyone who makes an effort will, we are thus responsible for our own disability. This is the explicit framing from PACE ideologues.

It has little to do with cause and everything to do with how to fix it and who is responsible for the outcome. For now, we are held responsible for our own misery because medicine does not accept responsibility for it. Cause, etiology and labels are not nearly as important as the sales pitch: YOU are responsible for your own recovery, stop bothering medical professionals who are too busy to take time to encourage you to move your ass.

 

[rvallee]

I haven't listened to it yet. But did he really say this?? That the other scientists are part of the anti-science campaign?

He roughly said so in a tweet:

 

[Cheshire]

Trial By Error: My Letter to Kate Kelland

This morning I sent the following e-mail to Kate Kelland, the Reuters reporter who wrote last week’s story about horrible patients and horrible me, and about how all this horribleness is affecting Professor Michael Sharpe. I cc’d Professor Racaniello and the two Reuters editors listed on the story.

Hi, Kate–

Congratulations on last week’s piece. It was late August when we met in New York, so I was wondering when it would appear. While I will be responding at greater length in the near future, I wanted to raise two issues of immediate concern.

Read here.

Edit: thread here.

 

[Inara]

Well, where's the MSG when we need it?

 

[Robert 1973]

I don't really follow your arguments, @rvallee.

All our experiences are in a sense mental and I do not see what experiences PWME have that can tell us whether the condition is due to a disturbance of brain function (mental) or something else.

The argument against CBT and GET has to be that the evidence for their effectiveness is not there. We cannot be sure whether any theory is right or wrong.

We cannot be sure that treating ME with radiation or organ removal is wrong either. If they worked then they would be justified. There is no reason to think they would work and I agree that there is no good reason to think CBT would work. But we have no reason to think any other 'physical' treatment would work at present because we don't know what is going on.

The problem as I see it is that so many advocacy efforts highlight the idea that this is a 'physical disease' rather than a mental one when we actually have no evidence to support that. Moreover they really bang on about it. My own thoughts about this is that from a medical point of view this distinction is pretty meaningless anyway. It would be entirely reasonable for the medical profession to ignore all the objections to PACE that it is based on the wrong theory on the grounds that the objections are confused and science does not work that way. Science goes for the theory supported by evidence, not the theory that looks right to start with.

Jo, I wonder if you might consider writing an article – perhaps for @dave30th ‘s blog – on why you think the physical disease v mental illness argument is wrong. It’s something which gets discussed a lot on here but doesn’t seem to be heard by the wider community. I agree with most of what you say, although, I think a distinction can be made between neurological and psychiatric illnesses, not because what causes them is necessarily any less physical or biological, but because of the characteristic symptoms of the conditions.

Parkinson’s is a brain disorder which results in non-psychiatric (eg motor function) as well as, in some cases, psychiatric symptoms (eg hallucinations, depression). Schizophrenia, as far as I understand, is a brain disorder which results in primarily psychiatric symptoms (hallucinations and delusions). They are both physical brain diseases but I’m comfortable with there being a distinction between neurological and psychiatric. I certainly don’t think it would be helpful to label Parkinson’s as psychiatric or “mental”, although I wonder if schizophrenia patients might be better served by neurologists.

So, for me, the question of whether ME should be labelled as psychiatric/mental is not about whether it is physical/biological or whether it is a brain disorder, but more a question of whether the symptoms are primarily psychiatric. I would argue that they are not, although, as with Parkinson’s, it may result in some psychiatric symptoms.

I think it is fairly well established now that (as PACE informed us) PEM is not affected by changing the way that patients report that they perceive their symptoms or illness, and I have not seen any evidence which suggest that PEM results from delusion. It may be that, like the movement symptoms of Parkinson’s, PEM is a consequence of abnormal brain pathology, but, to me, that would make it neurological rather than “mental” or psychiatric.

So I agree with those who say it is wrong to label ME as mental or psychiatric, but I also agree that it is wrong and deeply unhelpful to suggest or imply that psychiatric illnesses do not have a physical or biological cause, or that they are in any way less serious. To me, that is the problem with mental v biomedical.

However, I should perhaps add that I don’t think it is wrong for patients to advocate for increased funding for specifically biomedical research. I think we should, not because I think there shouldn’t be any psychological ME research, but because 1) most psychological ME research has been of a very low quality and produced no benefit to patients, 2) the amount of funding it has received has been grossly disproportionate, and 3) biomedical ME research has been grossly underfunded for 30 years.

If you were to write an article, I also think it would be important to include the ethical concerns we agreed on in the thread about Diane’s blog (eg https://www.s4me.info/threads/journal-of-medical-ethics-blog-it’s-time-to-pay-attention-to-“chronic-fatigue-syndrome”-2019-oleary.8439/page-8#post-149577 and https://www.s4me.info/threads/journal-of-medical-ethics-blog-it’s-time-to-pay-attention-to-“chronic-fatigue-syndrome”-2019-oleary.8439/#post-148317)

I also think it’s important to distinguish between well defined psychiatric illnesses and the normal range of emotional ups and downs which seem to be increasingly conflated with mental illness – just as ME has been conflated with tiredness or chronic fatigue.

 

[Jonathan Edwards]

I wrote a chunk on this when I started writing that book. I agree with what you say. An interesting one is Alzheimer's- is that neurological or psychiatric?

It might be worth trying to make it a stand alone piece for somewhere. Maybe I should think about it.

 

[duncan]

Ever live with someone who has brain cancer? You want research into curing the cancer. It's pretty much all biomedical. Psychiatric research takes a back seat. It's downstream and the clock ticking follows a tumor cadence.

What has psychiatry done for ME/CFS? For late stage Lyme? For brain cancer? For channelopathies? Oh, wait, let me take a guess: mischaracterize and stigmatize their sufferers?

This isn't a pissing contest about science. It's about it's abdication. It's about saving dollars at patients' expense.

 

[Webdog]

"biological or psychiatric" is no longer a debate according to US health agencies. It's biological.

I think the distinction is important, largely because patients with psychiatric conditions get referred to psychiatrists, and may be denied appropriate care by medical doctors (e.g. no symptomatic treatment for pain, orthostatic intolerance etc).

US Centers for Disease Control and Prevention (CDC)
"ME/CFS is a biological illness, not a psychologic disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have multiple pathophysiological changes that affect multiple systems."

National Academy of Medicine
ME/CFS "is a medical – not a psychiatric or psychological – illness."

New York State Department of Health
ME/CFS "is not a psychiatric disorder and it is not cause by a lack of exercise, contrary to common belief."​

 

[JaimeS]

I've had a go at responding. Here's what I said:


After all that effort I think I'll have to spend the afternoon lying in a darkened room to recover. Who know whether it's worth it and anyone reads the comments.

Edit - looks like it's been deleted. My first comment sat there awaiting approval for a while and was then approved, this one had vanished. Oh well.

@Trish and all

I have just responded- had not seen yours. It’s gone in the name of Mr B who has the account. My name is at the bottom.

Quick glance at yours. Mine has some similar points. I am shaking like a leaf. Will join you in the darkened room.

A healthy person just can't understand what it takes. Thanks, you two.

I'm really behind because I dared take a break during this whole snafu, but I needed it. I'm off from #MEAction this week, but I'll be keeping an eye.

 

[Jonathan Edwards]

Ever live with someone who has brain cancer? You want research into curing the cancer. It's pretty much all biomedical. Psychiatric research takes a back seat. It's downstream and the clock ticking follows a tumor cadence.

Have you ever lived with, and had to nurse singlehanded for a year, someone with paranoid psychosis?
Let's not belittle psychiatric illness or the skill that good psychiatry brings to keeping people alive who would otherwise be now dead (i.e. my wife).

 

[Jonathan Edwards]

"biological or psychiatric" is no longer a debate according to US health agencies. It's biological.

What I am hoping to explain to friends here is that this is not a cogent way to phrase things.
Psychiatry is biological too. There are no spooky souls sitting in heads that fall outside biology. So there is no 'biological or psychiatric' divide. Psychiatric is a subset of biological.

The US health agencies have fudged this, and if those involved know what they are doing they will be aware of this. Their claim that ME is biological is actually supported by no reliable evidence from science. The best evidence comes from listening to PWME, not from any research so far.

The real problem is that the psychiatrists have no clue how to deal with ME, whether or not it can be classed as psychiatric or neuropsychiatric or whatever.

 

[Robert 1973]

I wrote a chunk on this when I started writing that book. I agree with what you say. An interesting one is Alzheimer's- is that neurological or psychiatric?

If there is a continuum from neurological to psychiatric, I would guess that Alzheimer’s is somewhere in the middle. But I’m no expert!

National Academy of Medicine
ME/CFS "is a medical – not a psychiatric or psychological – illness."

I think that is a very troubling statement – particularly for people with psychiatric illnesses. There is a reason why all psychiatrists are qualified medical doctors. Psychiatry is supposed to be a branch of medicine.

 

[JaimeS]

Just a further thought @Andy and the S4ME team: Would it be legitimate for S4ME to publish links to the Lancet paper in the twitter feed, along with links to the follow up papers? Gives everyone the chance to see the whole picture; shows very clearly that we are not afraid for people to see the whole picture, in fact it is asking for them to do exactly that; undermines MS's incessant bleating about people reading the paper; shows how helpful we are .

#ShareBadScience ???

 

[JaimeS]

Twitter needs to add an easy one click button for 'please delete your tweet'.

It's this meme:

 

[Esther12]

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'm also worried of the opposite - that it will encourage a small group of people to believe that they're doing effective advocacy challenging poor quality science by sending rude messages to academics on twitter. Telling people who, for example, have been mistreated at some CFS clinic that a useful way to prevent other patients facing similarly bad experience is to send sweary tweets could be really harmful.

[Sorry if I've missed discussion related to this, struggling to keep up with all the new posts].

 

[Binkie4]

Thanks @JaimeS. I’m off too, to be continued. Hope you feel revived!! soon.

 

[Robert 1973]

Their claim that ME is biological is actually supported by no reliable evidence from science.

Hang on, haven’t we just agreed that all illness is biological? So if ME is an illness it must surely be biological.

 

[JaimeS]

Sometimes I have thought that it is not really half as bad as expected, and that he could be quite likeable. But he then always manages to write something to make one conclude that one was right all along.

Same, and same. His earlier work is more cautious and more sensible. Over time it gets worse... and worse... and worse.

And even in the earliest stuff I've read, there was always a bit of a collegial nudge-and-a-wink in there for listeners 'in the know'. By which I mean psychosomatic enthusiasts.

 

[duncan]

Let's not belittle psychiatric illness or the skill that good psychiatry brings to keeping people alive who would otherwise be now dead (i.e. my wife).

I am sorry for the loss of your wife.

There are some priests that have helped people. And some still perform exorcisms. But I don't believe in demons. And that would not have helped my dead parent who in reality had a brain tumor. Neither would a psych, but he might have misdiagnosed him were it not for MRIs.

My solution is to avoid religionists or theocrats.

I avoid psychs for similar reasons.

That's not too say medical doctors don't make mistakes. Of course they do. Say, neurologists. They do make mistakes. They also have been known to kick the can down the road at the expense of sick people. But they don't make things up, like FND or MUS because there are no real answers yet, and some profession is willing to step into the breach with a mystical thing that enables those neurologists or whatever to embrace a mistake or kick the can down the road.

You cannot justify a profession for helping one person, but I can condemn one for the wholesale calumny and ruination it has levied upon multiple patient communities.