What we're not being told about ME - UnHerd (Tom Chivers)

MSEsperanza

MSEsperanza

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What we're not being told about ME - UnHerd (Tom Chivers)

2021-08-25

There is surely no disease more cruelly misnamed than “chronic fatigue syndrome”. It is mysterious, apparently triggered by viral infection, and can last for months, decades, even a lifetime. Patients can be housebound or even bedbound for years. But the name makes it sound like they are just a little bit tired.

Apart from Covid, it is probably the most controversial disease in the world and, in fact, chronic fatigue, or ME/CFS to give it its proper name, does seem to share many features and symptoms with “long Covid”: fatigue, brain fog, pain on exertion, the assertion that the affliction is purely psychological. And for over three decades, patients have been told that the treatment for it is to get up and do some exercise, even though for many, exercise seemed to actively make their condition worse. They have been told, in near-explicit terms, that it’s their responsibility to get better.

Recently, it looked as though that was going to change. The NHS guidelines for treatment were going to be updated, and patient groups were happy. But then, at the last minute, that was delayed, and many patients are feeling betrayed and furious. One man I spoke to, John Peters, has been in its grip for 35 years.

https://unherd.com/2021/08/what-were-not-being-told-about-me/
 
Thank you to John Peters, Jonathan Edwards and Chris Ponting for your contributions to this article. Very much appreciated.

And thank you to the author Tom Chivers for listening and asking good questions.

I think Chivers got the main issues with the delay of the guidelines and with the psychosocial approach to ME right and there are many excellent passages in the article -- again, thanks to John Peters and Jonathan Edwards (and sorry for being too PEM-ed and brain-fogged now to quote those passages here -- hope others will highlight them.)

Just two points I hope will be added in a follow-up:

The point about patients' harassment against researchers. This issue has been hugely exaggerated by some researchers. Chivers' argument that patients' anger is understandable is good per se, but I'm concerned it could be misleading in this context.

Forgot the 2nd point.

(Edited to add: The title of the article alone is great -- I wonder if Chivers could do a series on it.)

Edit 2: Addes another thanks.
 
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Just once again think we perhaps should prepare counter-arguments for points that critics will focus on? (Especially for sharing the article on social media.)

E.g.: In addition to the essential points I think Chivers really understood from Jonathan Edwards' expert testimony, it's also actually possible to apply proper research methodology in the field of ME.
  • There are objective measures that are applicable for assessing improvements and deterioration in ME --- see Brian Hughes' Twitter thread here -- forum post here.
  • It's also possible to use subjective endpoints in addition to objective measures as primary endpoints. So using objective measures does not mean to devalue subjective symptoms like pain. But relying only on subjective outcomes in unblinded trials or switching primary endpoints and/or selecting only those points that are likely to support researchers' underlying assumptions (bias), isn't OK.
Edited (wording).

Apologies for being repetitive with these points.
 
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It is a good article. And I thank Tom Chivers for taking the time to get most of it right, and John Peters and Jonathan Edwards for your contribution.

I just wish the stuff about researchers being threatened and attacked wouldn't keep coming up in this way without the caveat that what most of them call attacks are criticisms of their research methods. No mention too of the way these same researchers deliberately twisted reporting of the outcomes of trials to appear to get the answers they wanted, or refusing to release data for years and needing to be taken to court. No mention of the immeasurable harm their treatments and gaslighting have done to countless thousands of patients for decades. No, just poor little me researchers get a few emails they don't like and get to spread nasty lies about the whole ME community yet again.

Sorry about the rant. For some reason that part of the article hit a sore spot.

Edit:
This is the relevant section:
Meanwhile, a fraught area of medicine gets even more toxic. When I last wrote about ME/CFS, in 2017, one researcher told me that “The last time I said anything public about CFS, I got followed around by an angry mob for about a year, on Twitter and email. Some even turned up to talks I gave, and I’ve heard of them turning up to people’s houses or doxxing them.” The author of a study in that piece said she had received death threats. Another researcher, who I know personally to be pretty fearless, told me when I tried to speak to them for this piece: “I’m afraid I don’t go within a million miles of ME/CFS these days. Just too much grief.” ME/CFS patients have a reputation for being angry.

Partly I think that’s caused by the sheer number of patients – approaching a quarter of a million in the UK alone. With that number of people, it only takes a tiny percentage to contaminate the whole debate. But it’s also because those people have felt ignored for so long.

Often the argument between sufferers and observers descends into a poisonous row over whether ME/CFS is “psychological” or “physical”. But patients like John are keen to stress that that shouldn’t be the area of contention. What’s important is that the CBT/GET paradigm doesn’t seem to work, at least beyond a placebo effect in a subset of patients. The evidence has been assessed and found wanting and the delay in publishing the guidelines just means that more patients will be put through it, against what appears to be the best scientific evidence.
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Trish said:
It is a good article. And I thank Tom Chivers for taking the time to get most of it right, and John Peters and Jonathan Edwards for your contribution.

I just wish the stuff about researchers being threatened and attacked wouldn't keep coming up in this way without the caveat that what most of them call attacks are criticisms of their research methods. No mention too of the way these same researchers deliberately twisted reporting of the outcomes of trials to appear to get the answers they wanted, or refusing to release data for years and needing to be taken to court. No mention of the immeasurable harm their treatments and gaslighting have done to countless thousands of patients for decades. No, just poor little me researchers get a few emails they don't like and get to spread nasty lies about the whole ME community yet again.

Sorry about the rant. For some reason that part of the article hit a sore spot.
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Given his previous article talked about this he may have felt it necessary to mention and I think the way it did helped defuse the argument and hence its use against patients as a whole - the SMC narative is around an undeserving patient group etc.
 
Midnattsol said:
Thank for emphasising the science, @JohnTheJack .
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:thumbup:

Often the argument between sufferers and observers descends into a poisonous row over whether ME/CFS is “psychological” or “physical”. But patients like John are keen to stress that that shouldn’t be the area of contention.

What’s important is that the CBT/GET paradigm doesn’t seem to work, at least beyond a placebo effect in a subset of patients. The evidence has been assessed and found wanting and the delay in publishing the guidelines just means that more patients will be put through it, against what appears to be the best scientific evidence.
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:thumbup:

Edited to add: There's a discussion on a members only thread on this and similar arguments. See here.
 
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Adrian said:
Given his previous article talked about this he may have felt it necessary to mention and I think the way it did helped defuse the argument and hence its use against patients as a whole - the SMC narative is around an undeserving patient group etc.
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I guess my complaint is not entirely about the way Tom Chivers has framed this part of the story. It's more that the BPS people keep using it as an excuse not to engage on the subject. This in particular:
"Another researcher, who I know personally to be pretty fearless, told me when I tried to speak to them for this piece: “I’m afraid I don’t go within a million miles of ME/CFS these days. Just too much grief.” ME/CFS patients have a reputation for being angry."

Why did Chivers have to add 'who I know is pretty fearless' to his reporting of this. It makes it sound like the so called attacks are really major, yet we've never seen any evidence of this, nor has Tom Chivers reported that he's seen any such evidence. He seems far too ready to take these excuses for not engaging at face value.

But I'll say no more about this. As I said, it's fairly a good article on the whole.
 
With reference to ME sufferers turning up and harassing researchers...
Really?
After 35 years of illness, I count it as a win to get up and in to my garden. After a hospital visit for other issues, the rest of the week is lost.
Who are these fit "sufferers" able to travel and kick up a fuss?
People without a cogent argument have consistently played the victim card.
Sadly, the ME community has too many victims, but its the hangers-on pretending that CBT/PACE is the answer, not the patients who make the most noise. The patient is almost always invisible to the wider world.
As for depression, yes we all have rotten moments but the majority of us still hope to be better tomorrow, or the next day. Life with ME and no expectation of freedom is too big a burden to carry every minute, every day.

This post has been copied and the following discussion moved to this thread:
Harassment claims in the media and social media.
 
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It’s an excellent article and I’m pleased he’s not got sidetracked on the ‘physical/psychiatric’ debate but made clear the evidence doesn’t support these treatments regardless of the aetiology.

On the harassment point, I think he’s fair to raise it in the way he does - we have to face it that, as a patient group, we have a PR problem. I hesitate to say this next bit but, IMHO, I do sometimes see behaviours that, whilst not necessarily abusive, are not helpful given the reputation we have.
 
Great article but not terribly happy about the harassment bit either.

If we're going to talk about harassment then talk about it in a balanced way. I daresay there have been ill judged letters or comments over the years but -

1. the newspaper smear campaigns over the decades, often with quotes from "experts" have caused many ME patients into being bullied and harassed by those around them into spending money they don't have on treatments that don't work. Then when left worse off in every way, they have been dismissed and disgarded as worthless individuals who simply don't want to get better.

2. researchers who know full well that their hypothesis is unproven have stood by and allowed their hypothesis to be used by both insurers and benefits agencies alike to deny desperately needed support to vulnerable people. Where support is given it's usually at such physical cost to the claimant that it often causes a deterioration in their condition.

3. having reported abuse to a tribunal (PACE FOI tribunal) and then been questioned further, a researcher admitted that what she called abuse was one incident of minor heckling. If that's the case maybe everyone in my old school debate team should be claiming harassment and abuse.

4. Esther Crawley when alleging she was the victim of abuse waved a cut and paste threatening letter in front of her audience. She even quoted from it while neglecting to mention it was a mock up & not an actual letter sent by anyone.

Personally, I would rather a few angry letters or emails, even the odd threat than being outcast and denied the support I need. If you want to know what feeling threatened and intimidated feels like many ME patients can tell you - it's having the Benefits Agency review forms hit your doormat, knowing your GP thinks you could get better if you tried & won't support your claim, your family won't help you either because you wouldn't/couldn't afford to go on that LP.course they were goung in about and if your money is cut back any further a choice between heating and eating will seem like a luxury.

I'm sorry (to my fellow ME sufferers) if this appears to be an angry rant. I'm not angry - it's almost impossible to maintain fury over a period of decades anyway. I'm not angry, just saying.
 
It is good, I think. He is very sympathetic.

He also has a very good reputation as a science writer for coverage of crap studies.

It's interesting it's in UnHerd as it's a bit 'contrarian' and a lot of readers will instinctively be inclined to Spike crowd. Though not Tom, I should add.

It is a shame that the harassment keeps coming up and I think as Trish says this is a sign of how well they have succeeded in shaping the narrative.

But I also think it's interesting no one would actually respond on the arguments.

Worth noting how these stories are constructed. Journalists have to put the other side, but where and how they include it matters. A few years ago it would be lede and bulk of story BPS case, a short paragraph near end with a quotation from Charles Shepherd, conclusion BPS case. This article is lede and bulk of story patient and science, short bit near end with BPS case (with notes of caution), conclusion science and patient.
 
You're right, John, it is better than a lot of articles. And perhaps I should take a positive view in that when some BPS people were asked for comment, no one was willing or able to make a scientific argument. Chalder talked nonsense about not saying anything until it's published and another refused to comment at all because he's afraid of sick people. It makes them look pretty silly and very unprofessional.
 
Trish said:
You're right, John, it is better than a lot of articles. And perhaps I should take a positive view in that when some BPS people were asked for comment, no one was willing or able to make a scientific argument. Chalder talked nonsense about not saying anything until it's published and another refused to comment at all because he's afraid of sick people. It makes them look pretty silly and very unprofessional.
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He was scornful of Chalder's response.
 
A great article.

But if the threats to researchers are to be reported, it should also be reported that they have been repeatedly been misreported or been based on hearsay or even in some cases fabrication. I do not doubt there have been intemperate things said, but to assert harassment when the only legal forum this has been addressed only found evidence of a single incidence of heckling in a public forum and no legal action appears to have taken place in relation any of the claimed death threats, is potentially misleading when we also have evidence of at least one GET/CBT advocate deliberately misrepresenting claims and presenting false evidence.
 
Trish said:
...I just wish the stuff about researchers being threatened and attacked wouldn't keep coming up in this way without the caveat that what most of them call attacks are criticisms of their research methods. No mention too of the way these same researchers deliberately twisted reporting of the outcomes of trials to appear to get the answers they wanted, or refusing to release data for years and needing to be taken to court. No mention of the immeasurable harm their treatments and gaslighting have done to countless thousands of patients for decades. No, just poor little me researchers get a few emails they don't like and get to spread nasty lies about the whole ME community yet again...
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Indeed.

Unless Tom has evidence supporting the allegation: "... and I’ve heard of them turning up to people’s houses or doxxing them." it would be prudent not to have quoted that within the article. It risks being reiterated, unevidenced, in other media reports and blogs.

Wessely, himself, pointed out his own house in a slide at the end of his Gresham College lecture (at which one of his sons and a school group were present in the audience) and said he'd be drinking in the pub in that road, later, after the lecture. What does one make of his broadcasting where he lives and where he goes for a pint?

My understanding is that the "threatening phone call" received by Wessely which led to the lecture being cancelled and then uncancelled, was anonymous. It could have come from anywhere and from any group. There had been several activist groups protesting about the lecture for weeks.

With Michael Hanlon having died, in 2016, he can no longer be called upon to account for what he wrote in that appalling Sunday Times feature (5 May 2013).

Several years ago, I worked with two others on an FOI around various claims made by Hanlon, in that article, concerning the Metropolitan Police. Unfortunately, due to the domestic situation of one of the co-authors of this FOI, our draft wasn't completed and never submitted.
 
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Dx Revision Watch said:
Unless Tom has evidence supporting the allegation: "... and I’ve heard of them turning up to people’s houses or doxxing them." it would be prudent not to have quoted that within the article. It risks being reiterated, unevidenced, in other media reports and blogs
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That does seem problematic. Was that hearsay evidence, someone reporting what they had heard, or was it first hand evidence from the people at whose house protesters allegedly turned up, or doxxed?
 
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