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

[Jonathan Edwards]

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

Yes we have agreed that. Try reading the sentence again. The point is that the science does not help. What I think is counterproductive is the constant insistence that somehow the science has proved that ME is biological rather than something else. It hasn't at all. Quite clearly the US organisations were implying that 'biological' is indeed in contrast to something else, as we know they shouldn't have, and science proves it. People like Simon Wessely are smart enough to know that argument can be felled with the brush of a hand, either from the right side or the left side. Why use arguments that flimsy when there are arguments made of solid rock?

 

[JaimeS]

If people want to use twitter to express their pain and anger without thought ofthe consequences, that's up to them, but it would be good if they first tried to disassociate themselves from any sort of advocacy effort related to ME/CFS.

There are those for whom there is a constant well of rage about how they've been treated. How the government we've paid taxes to all our lives has broken all its promises to us. How their bodies won't listen anymore, but punish them for doing anything they love.

But you can tell when someone has prioritized the expression of that rage over all else. Over progress, over their fellow patients. They have anger, it feels good when they let it out in whatever direction, that's what they care about.

I understand this without supporting it.

 

[JaimeS]

Something struck me though with whats going on in the twittersphere;
pwME are condemning the likes of Q for their behaviour yes; but aside from that this whole current onslaught from the Psychosocial camp does appear to have galvanised the ME community as a whole and 'drawn a line in the sand'.

Yep, same.

 

[Cheshire]

My solution is to avoid religionists or theocrats.

I avoid psychs for similar reasons.


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.

Because ME sufferers are not helped by a bunch of bad psychiatrists, that doesn't mean we should throw the baby with the water. For many, many patients, psychiatry has been a life saver.

 

[Jonathan Edwards]

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.

You really have made a pig's ear of that one, Duncan.

My wife is fine because she had ECT, not exorcism.

 

[duncan]

You really have made a pig's ear of that one, Duncan.

My wife is fine because she had ECT, not exorcism.

I am glad.

Because ME sufferers are not helped by a bunch of bad psychiatrists, that doesn't mean we should throw the baby with the water. For many, many patients, psychiatry has been a life saver.

I think you have inverted my stance. It's not that ME sufferers have not been helped by bad psychs, they have been hurt. Many have been hurt. And many with other diseases. Who do insurance carriers send beleagured patients with controversial or little understood diseases in order to get out of paying disability? Psychiatrists. Who are rushing to craft MUS into a sustainable model for screwing patients? The same.

Not helping us is neutral. This is far from neutral.

 

[Cheshire]

I am glad.


I think you have inverted my stance. It's not that ME sufferers have not been helped by bad psychs, they have been hurt. Many have been hurt. And many with other diseases. Who do insurance carriers send beleagured patients with controversial or little understood disease to get out of paying disability? Psychiatrists. Who are rushing to craft MUS into a sustainable model for screwing patients? The same.

Not helping us is neutral. This is far from neutral.

Indeed, you're right, hurt.
But that does not change anything to what I said.
"Because ME sufferers have been hurt by a bunch of bad psychiatrists, that doesn't mean we should throw the baby with the water. For many, many patients, psychiatry has been a life saver."

 

[JaimeS]

The entire framing of mental vs medical is meant to change the conversation from the real issue, that it is contradicted by lived experience and a decades-long body of research, to a fake one. But the debate and controversy exist only because their model has achieved dominance. Yet it's ironic that they insist they do not claim (officially) that it is mental anyway so this debate is just fundamentally dishonest because it depends on mischaracterizing the words of thousands, including hundreds of academics.

Yes -- and that's why we said in the letter that it isn't about "mental vs physical" but about "good science vs poor or misleading science". Jonathan E is right to say that it's common to frame the argument in the first way, but I argue we should not.

Mental illness is embodied. It has physical signs & symptoms. (Yes! It has cytokines, NKC effects, stuff that shows up on brain scans.) So to say a mental illness contrasts with a physical one is imprecise bordering on incorrect.

I also fear when we use this argumentation that we are attempting to be seen as "good patients" with "real problems" -- as opposed to those "bad patients" with "no real problems". But patients with mental health issues have a real illness. And I don't like the ethics of booting another patient group under the bus, and more pragmatically... it's a bad look for us.

Let's stick to "treatments based on those philosophies don't work" (true) "there are no long-term effects on follow-up or people are actually worse off" (true). "The data had to be fudged to make it appear to work". There is a lot we can say before we say "but our disease is real".

[Edit: I was replying as I read the thread; I see a lot have said basically this. Can we shift this narrative as a group? People follow an example. And yes, I've been asking #MEAction folk not to frame it this way as well.]

 

[duncan]

Indeed, you're right, hurt.
But that does not change anything to what I said.
"Because ME sufferers have been hurt by a bunch of bad psychiatrists, that doesn't mean we should throw the baby with the water. For many, many patients, psychiatry has been a life saver.

Ok, so where do we say that line drawn is acceptable vs. unacceptable? 67% helped, 33% hurt? 80% helped, 20%hurt? 90/10? I think the democratization of medicine is not an acceptable development, and should be eschewed wherever and whenever possible.

And a so-called psych appraisal should never be employed solely because it saves an insurance company or state agency money. This sort of thing was used politically to squelch dissidents in the old USSR.

 

[Forestvon]

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 hope that some news media will publish a counternarrative.

Was it the NY Times too - thought it was the NY Post.

 

[Hip]

To begin such a thread, I was recently reminded of when David Jameson in a personal letter to Prof Malcolm Hooper threatened to report Hooper to his university or other authorities simply because Jameson disagreed with Hooper's biomedical view on ME/CFS.

I have a full copy of Hooper's letter on my computer. You can also find the original PR thread on the Wayback Machine.

Here is the relevant paragraph from Prof Hooper's reply to Jameson, relating to Jameson's threat to report Hooper to his university :

You accuse me of doing potential damage to CFS patients by putting them off the only treatments that have been proven to be effective. I refute your allegation that I appear to be putting out deliberate misinformation, but you are of course free to carry out your threat to complain about me in any forum you choose, including to my University. However, if you exercise this option, be aware that you will need supportive evidence and that your own credibility will come under scrutiny.

Malcolm Hooper

Given that Jameson on Twitter is always talking about ME/CFS patients harassing the psyche researchers, this is a case of pot-kettle-black.

 

[Hoopoe]

What I think is counterproductive is the constant insistence that somehow the science has proved that ME is biological rather than something else. It hasn't at all.

My mental model of this is roughly this:

There are different competing ideas of varying complexity on the cause and nature of ME. All have some arguments for and against which determine how credible and likely to be true an idea is.

Lived experience tells us patients a lot, but it seems to carry almost no weight in comparison to expert opinion. So Wessely and co get to decide what this illness is and what it's not.

Findings like the PEM on the 2-day CPET do add add credibility to the idea that this is some illness or group of illnesses, even if the central disease process hasn't been identified yet. I think these findings count more than expert opinion, if they fit together with others to form a somewhat coherent picture and are sufficiently reliable.

In contrast I find the BPS model just doesn't fit with reality and can often be dismissed merely on common sense, and the science it leans on seems to be of worse quality than the biomedical one (not that it is particularly good).

I also find it's a double standard that we must deliver definitive proof, while BPS people appear to be making things up as they go.

This little exercise seems to tell me that we patients lean on to science so much because we have been discredited as reliable witnesses to our own condition.

PS: and on further reflection, psychological illness explanation seem to be often used for social control.

 

[MSEsperanza]

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.

I have wirtten some snippets on this topic but would prefer to discuss this on the members only advocacy forum. I won't be able to contribute much myself though and don't feel up to start a thread.

What do others think [edit:] about discussing this on a members only thread?
(Too knackered now to tag anyone, sorry)

 

[Jonathan Edwards]

This little exercise seems to tell me that we patients lean on to science so much because we have been discredited as reliable witnesses to our own condition.

I agree with all of that. But patients should lean totally on science because science is just testing if an idea holds up or not. I think what is hard for non-scientists to grasp is that science is most powerful when it is saying 'no, this does not fit' - as you say - not so much when it is saying 'this would fit'.

One thing we can say is that the hypothesis that the PACE trial shows that CBT and GET are useful is disproven. The rituximab data elegantly show why.

Karl Popper is famous for saying that science consists of those ideas testable by experiment. However, in one of the essays in his book 'Conjectures and Refutations' he spends a little time pointing out that before you do an experiment you can also test an idea to see if it hangs to gather in the first place. That is just as much science, and it is in fact how physics was born 300 years ago - by rejecting ideas that seemed OK until you looked at them carefully, when they fell apart. The BPS theoretical base falls apart because it is essentially impossible to corroborate. It may be possible to refute, but that is not really what we want of a true theory! A good theory is one that could be refuted but can also be meaningfully corroborated. BPS theory is too vague to know whether you have corroborated it or not. Which brings things back to Popper's antiscientific paradigm of Freud.

The really fun thing about science is the endless process of learning how we understand and test things. There is always more to learn. That is what makes S4ME so much fun. I haven't enjoyed good arguments so much since the 1990s.

 

[Hoopoe]

One thing we can say is that the hypothesis that the PACE trial shows that CBT and GET are useful is disproven. The rituximab data elegantly show why.

And that is merely holding the BPS theories to the same standard as biomedical theories.

 

[large donner]

Have you ever lived with, and had to nurse singlehanded for a year, someone with paranoid psychosis?

Surely paranoid psychosis is a symptom of a neurological condition. Just as you alluded to in a post early today about chronic fatigue not being a diagnosis isn't the same true in the example of paranoid psychosis?

If a plumber diagnosed and treated the paranoid psychosis correctly and effectively we wouldn't question whether we should move the condition to the plumbing field.

When opportunist psychiatrists pick up dustbin diagnosis patients from other disciplines and continue to miss the diagnosis we call that liaison psychiatry.

Surely when a psychiatrist picks up a dustbin diagnosis from a bad neurologist, for example, and treats it successfully we should just call that neurology and tell the neurologist to do his job properly.

That is effectively how so many conditions have move out of psychiatry and into biological medicine over the last 100 years.

Superstition control moves further and further away from the high priests when more is known, we don't hand the new objective diagnosis back to the high priests when their understanding of it is crushed and tell them to get on with it.

 

[large donner]

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!

So if a psychiatrist gives someone with the flu a lemsip does that put the flu somewhere on the continuum also?

 

[Stewart]

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.

This is a fear that fleetingly passed through my mind when I read the Reuters article last week. Sharpe seemed to be making the argument that a small, well organised group of aggressive activists were forcing psychologists - including him -out of the field, and there were now only a handful of researchers left. What, I asked myself, is to stop those activists from reading this article and concluding that they had almost succeeded - that they only needed to ratchet up the hostilities a few notches and then the last few psychologists would inevitably follow Sharpe out the door?

Then I remembered - this well organised group of militant activists doesn't actually exist outside the imaginations of Sharpe and his allies. I used to think they were real - plotting nefarious deeds in some dark corner of the internet that I was unaware of. However the events of the last few years have made it increasingly clear that (and this is obviously just my opinion) the 'abusive patient' narrative is not just an exaggeration but almost certainly a complete fabrication. Just look at the Reuters article - despite the fact that it was in the pipeline for over six months Sharpe couldn't find any genuinely abusive messages to feed to Kate Kelland. Even the media onslaught of the last few days has only resulted in one or two crude tweets being directed his way. Sure, people are annoyed and angry with him - but on the available evidence to date almost no-one is being abusive towards him. No-one.

So I understand the concern but I honestly don't think we need to worry about it - unless of course we start to see abuse being publicly directed at BPS advocates.

 

[Hoopoe]

This is a fear that fleetingly passed through my mind when I read the Reuters article last week. Sharpe seemed to be making the argument that a small, well organised group of aggressive activists were forcing psychologists - including him -out of the field, and there were now only a handful of researchers left. What, I asked myself, is to stop those activists from reading this article and concluding that they had almost succeeded - that they only needed to ratchet up the hostilities a few notches and then the last few psychologists would inevitably follow Sharpe out the door?

I've had similar thoughts, but along the lines of people reacting to being powerless by doing the only thing they can: venting and expressing their frustration by calling Sharpe and colleagues names. An article like that of Kelland can plausibly increase the feeling of being powerless and therefore push people more into this behaviour.

I've had the urge to do exactly that for the first few days, but now feel calm because we really seem to be winning. The PACE authors are now just trying to make us suffer in retaliation.

 

[Esther12]

This is a fear that fleetingly passed through my mind when I read the Reuters article last week. Sharpe seemed to be making the argument that a small, well organised group of aggressive activists were forcing psychologists - including him -out of the field, and there were now only a handful of researchers left. What, I asked myself, is to stop those activists from reading this article and concluding that they had almost succeeded - that they only needed to ratchet up the hostilities a few notches and then the last few psychologists would inevitably follow Sharpe out the door?

Then I remembered - this well organised group of militant activists doesn't actually exist outside the imaginations of Sharpe and his allies. I used to think they were real - plotting nefarious deeds in some dark corner of the internet that I was unaware of. However the events of the last few years have made it increasingly clear that (and this is obviously just my opinion) the 'abusive patient' narrative is not just an exaggeration but almost certainly a complete fabrication. Just look at the Reuters article - despite the fact that it was in the pipeline for over six months Sharpe couldn't find any genuinely abusive messages to feed to Kate Kelland. Even the media onslaught of the last few days has only resulted in one or two crude tweets being directed his way. Sure, people are annoyed and angry with him - but on the available evidence to date almost no-one is being abusive towards him. No-one.

So I understand the concern but I honestly don't think we need to worry about it - unless of course we start to see abuse being publicly directed at BPS advocates.

It's certainly no well organised campaign, but you only need a few people to be stupid on twitter and you can get a story at the top of Daily Mail online... as we just saw this week with Quasar.