United Kingdom: ME/CFS in The Times (including Sean O'Neill)

[Barry]

Two more letters on ME in Friday’s Times:
https://www.thetimes.co.uk/edition/...ng-and-the-call-for-a-public-debate-62qwqc2vv

@Jonathan Edwards I wonder if I could persuade you to write to The Times in response to the first letter. It might be a good opportunity explain some of the issues to a wider audience, and people tend to take more notice of medical professors. I even wonder if you might ask Sean O’Neal if The Times would like you to write a comment piece, as it seems to be keen to support people with ME at the moment

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If any response is made to Helen Nicholls' letter, then I very much hope a considered approach is taken with regard to her perspective as a patient, and not on the assumption she would/should understand the science and implications behind what she has said. More an educational perspective might be better. See also my previous post.

 

[Robert 1973]

It’s ok and valid to criticise someone if they are writing something that directly harms people.

I was meaning that would challenge the content of her letter but I would not want to criticise her personally.

I suspect there will be a subgroup of those diagnosed with ME/CFS who have a condition, or variant of the condition, that GET somehow works for.

I used to think this but having studied PACE etc. I now conclude that GET is unlikely to be of any significant help to anyone diagnosed with ME/CFS.

 

[Barry]

I used to think this but having studied PACE etc. I now conclude that GET is unlikely to be of any significant help to anyone diagnosed with ME/CFS.

I would agree with accurately diagnosed. But Helen Nicholls was diagnosed in 2001, so how confident can we be in the accuracy of a diagnosis at that time.

 

[Sean]

I suspect there will be a subgroup of those diagnosed with ME/CFS who have a condition, or variant of the condition, that GET somehow works for.

So why didn't they show up in PACE or FINE?

I would agree with accurately diagnosed. But Helen Nicholls was diagnosed in 2001, so how confident can we be in the accuracy of a diagnosis at that time.

PACE used Oxford criteria. Doesn't get much broader and more non-specific than that in this field. But they couldn't even get a result with that.

I agree that we must avoid getting into pointless arguments with individuals that could be in any way misconstrued as attacks or attempts at censorship. But those two critical facts can certainly be politely pointed out in response. The science about Helen Nicholls' claim just does not add up in her favour. The onus is on her to show it works, not on us to show it doesn't.

 

[Barry]

So why didn't they show up in PACE or FINE?

PACE used Oxford criteria. Doesn't get much broader and more non-specific than that in this field. But they couldn't even get a result with that.

I agree that we must avoid getting into pointless arguments with individuals that could be in any way misconstrued as attacks or attempts at censorship. But those two critical facts can certainly be politely pointed out in response. The science about Helen Nicholls' claim just does not add up in her favour. The onus is on her to show it works, not on us to show it doesn't.

I suspect there will be a small minority of long time, severely affected sufferers who will inevitably therefore have also become badly deconditioned as a consequence. And that for just some of those their ME/CFS may have spontaneously recovered, but still left them with the consequential deconditioning. Although such a patient would doubtless recognise a change in their symptoms, there may be some who would not appreciate the significance. I suspect this may be where the apparent reported recoveries from ME/CFS with GET come from - they no longer have ME/CFS, or never did have it.

 

[Esther12]

re PACE: it could be that some benefited from GET, some were harmed, and that roughly balanced out.

 

[Barry]

re PACE: it could be that some benefited from GET, some were harmed, and that roughly balanced out.

Yes, the individual data from the very few objective outcomes would need to be looked at. A very small % may have improved, same as maybe a very small % report so in the wider community. What would be really useful to identify is whether they would have met a proper diagnosis for ME/CFS just prior to doing GET; I suspect not.

 

[rvallee]

Two more letters on ME in Friday’s Times:
https://www.thetimes.co.uk/edition/...ng-and-the-call-for-a-public-debate-62qwqc2vv

@Jonathan Edwards I wonder if I could persuade you to write to The Times in response to the first letter. It might be a good opportunity explain some of the issues to a wider audience, and people tend to take more notice of medical professors. I even wonder if you might ask Sean O’Neal if The Times would like you to write a comment piece, as it seems to be keen to support people with ME at the moment

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GET does not require a prescription or even a medical professional. This is a non-issue. The real issue is the process of requiring compliance and exaggerating its impact while hiding the horrible consequences for most. Even if GET were medically banned anyone could still do it. There's nothing special to it.

 

[Invisible Woman]

I'm happy for Helen Nicholls that she improved.

However according to multiple patient surveys GET only provides some improvement for a minority (some can be a very tiny amount), no change in others and the possibility of harm for the majority & that wouldn't be acceptable with a drug.

25+ years ago I finally found a drug that helped control an unrelated health problem really well. It was marvellous & improved my quality of life. Then the drug was withdrawn because in some patients it caused very serious side effects. Drug licensing is as much about safety as efficacy. Treatments like GET should be held to the same scrutiny.

Removing GET from the NICE guidelines doesn't necessarily mean that GET wouldn't be possible or available to those who would like to try it. It just shouldn't be recommended and the risks of long term harm should be clearly spelled out to those wanting to try it. Benefits and social support shouldn't be withheld for those who don't want it.

I would also point out that as we don't know where Helen Nicholls was treated with GET, we don't know what treatment she actually received. It might not have been GET as per the PACE manual but more geared towards pacing and reducing some activity in order that she could focus on activities that were more meaningful to her. What she describes as GET is not necessarily what GET is.

 

[Barry]

I'm happy for Helen Nicholls that she improved.

However according to multiple patient surveys GET only provides some improvement for a minority (some can be a very tiny amount), no change in others and the possibility of harm for the majority & that wouldn't be acceptable with a drug.

25+ years ago I finally found a drug that helped control an unrelated health problem really well. It was marvellous & improved my quality of life. Then the drug was withdrawn because in some patients it caused very serious side effects. Drug licensing is as much about safety as efficacy. Treatments like GET should be held to the same scrutiny.

Removing GET from the NICE guidelines doesn't necessarily mean that GET wouldn't be possible or available to those who would like to try it. It just shouldn't be recommended and the risks of long term harm should be clearly spelled out to those wanting to try it. Benefits and social support shouldn't be withheld for those who don't want it.

I would also point out that as we don't know where Helen Nicholls was treated with GET, we don't know what treatment she actually received. It might not have been GET as per the PACE manual but more geared towards pacing and reducing some activity in order that she could focus on activities that were more meaningful to her. What she describes as GET is not necessarily what GET is.

Very well put.

 

[Woolie]

Quite. I suspect there will be a subgroup of those diagnosed with ME/CFS who have a condition, or variant of the condition, that GET somehow works for. She would be right in what she said if the worst consequence of trying GET was that it simply did not work, with no further consequences. But of course that is not the case because a) Some people's physical health declines significantly, and b) For those it does not work for they are simply labelled as not really trying.

Its still puzzling. Surely, in those 15 years of being ill, a person would think to try gradually getting back into exercise - slowly and gradually, see how they go? I'm sure everyone here has had a go at that themselves, whether or not its been within a formal GET programme. Its common sense. I'm perplexed that anyone would need 15 years and a "professional" to get to that point.

I know the party line with GET is that only the "professionals" can do it correctly, because they have some sort of special insight into exactly how much to push and how much to pull back. But they can only use the feedback from the patient, right? The idea that a professional can have some sort of magical insight into the limits of your body - that you fail to posses - is frankly bizarre.

I'm also personally insulted at the insinuation that I'm only campaigning against GET because I haven't moved on. Hell, I don't even have a CFS diagnosis anymore, but unlike this person, who seems not to care about those left behind, I still care.

Its fine to tell your recovery story, but not to attribute motives to others.

 

[wigglethemouse]

I don't get why the need to write this letter, which in particular is responding to another letter rather than a published article. I'm puzzled..............

The BPS crowd have used the argument before that people do benefit from GET so it shouldn't be removed. This will be their argument to NICE, a reason to not close the GET centers. I expect to hear more such stories in the future..... At minimum they need a way to save face.

 

[chrisb]

I have recently unearthed some of the advice given by the MEA and ME Action Campaign in the early late 1980's/early 1990's. The only significant difference between Pacing and GET seems to be that Pacing involved giving the sufferer the confidence to listen to their own body and stop when it told you to. With GET only the professional therapist has the key to unlock the mystery by ignoring experience and putting oneself wholly in the hands of the therapist. I know which seemed the healthier.

I once knew someone who swore by an American job-seekers manual. It was called something like "What colour is my parachute". God knows why. It advocated careful research to ascertain a niche in the market, and then preparing a sales pitch to the potential employer to show them that they have an unrecognised need which only you can meet. I sometimes wonder whether the book was widely read.

 

[Invisible Woman]

The BPS crowd have used the argument before that people do benefit from GET so it shouldn't be removed. This will be their argument to NICE, a reason to not close the GET centers. I expect to hear more such stories in the future..... At minimum they need a way to save face.

I expect you're right and more letters like these will pop up.

The BPS brigade will want GET centres to remain open. There may well be patients who do not have ME who respond to treatment so let them but with strongly enforced provisos -

Safety first - according to patients GET harms more than it hurts. We know that neither PACE nor many of the CFS clinics adequately define and record harms. That has to stop.

It is the responsibility of the person diagnosing or referring to the clinic and the clinic themselves to ascertain who is most likely to benefit from.the treatment and who is most likely to be harmed. They have to demonstrate they are able to reliably do that. They have to take responsibility when they get it wrong & patients need to be able to seek redress swiftly and through a process that doesn't make them more ill.

Informed consent is essential - just as with any other routine intervention like having a coil fitted or a gastroscopy where they clearly explain everything that can potentially go wrong.

No patient should be coerced nor have benefits or insurance payouts dependent on putting themselves through GET. No more of this shouldn't happen, the fact is it does. That has to stop.

 

[Hutan]

Posts about Simon Wessley's interview of Jeremy Hunt moved to
Who is Simon Wessely?

Posts about the deconditioning hypothesis have been moved to
The CFS deconditioning hypothesis

 

[janice]

I wonder and hope, that having listened to this interview, somebody who is good at word-craft, can get Jeremy Hunt on our side about damage to pwMW caused by GET.

Jeremy Hunt also banged on a lot about transparency in the NHS when things aren't working for patients.

 

[Cheshire]

Copied post

Warning over conflicting medical advice to coronavirus recovery patients

Medical authorities have been accused of giving conflicting and potentially harmful advice to tens of thousands of patients struggling to recover from Covid-19.

The NHS is urging patients to “get moving again” with a regime of physical activity to build up their strength. Its tips range from marching on the spot to using an exercise bicycle on days when it is too wet to go out for a walk.

Guidance from the National Institute for Health and Care Excellence (Nice), however, warns doctors that graded exercise therapy (GET) should not be recommended for people with long-term coronavirus symptoms.

Nice, which was not consulted on the NHS advice, has told doctors it is “aware of concerns about GET” and that it should not be assumed the therapy is appropriate for post-Covid fatigue.

https://www.thetimes.co.uk/edition/...ce-to-coronavirus-recovery-patients-d9xzwr6xl

 

[Andy]

Copied post

Warning over conflicting medical advice to coronavirus recovery patients


https://www.thetimes.co.uk/edition/...ce-to-coronavirus-recovery-patients-d9xzwr6xl

The author is Sean O'Neill, who wrote several articles around the time of the DecodeME funding announcement.

 

[ME/CFS Skeptic]

Copied post

Interesting: Sean O’Neill, Chief Reporter to the Times, was present and discussed strategies to get positive press for ME. He said for example:

Entry into the media was not just about transmitting a message that was important, expecting it to be picked up and responded to. It very rarely worked. Engagement with the journalist with an interest in the subject was essential. Contacts and personal initiative and connections in order to find the right person to take on the story were necessary

...

He had never had any dealings with SMC. He recommended ignoring them rather than entering combat.

There was also a discussion on spinal surgery for ME patients, following Jonathan Edwards request to make a statement about this.

 

[Andy]

Copied post

Trial By Error: The Times Fact-Checks BMJ on NICE Committee; My Letter to BMJ’s Fiona Godlee

"It is not often that a major news organization fact-checks BMJ, a leading medical publisher, in real time. But that’s what happened last week when The Times pushed back against biased BMJ reporting about the committee charged by the UK’s National Institute for Health and Care Excellence (NICE) with developing a new clinical guidance for ME/CFS. This isn’t the first time The Times has seen through the propaganda campaign emanating from those with financial and reputational interests in maintaining the GET/CBT approach despite widespread rejection of its theoretical and scientific underpinnings.

As I noted previously, the BMJ article, published August 3rd, presented quite a stupid line of argumentation—namely, that the draft NICE guidance published last November was developed without sufficient reliance on the available evidence. Sean O’Neill, a Times reporter whose previous work has demonstrated a more nuanced appreciation of ME/CFS issues than is common among his peers, countered such claims in a piece published the next day. The final version of the guidance is scheduled to be released next week. Perhaps other members of the UK press will follow the Times‘ lead and stop believing everything they read about ME/CFS in major medical journals and in press releases from the likes of London’s Science Media Centre."

https://www.virology.ws/2021/08/10/...ice-committee-my-letter-to-bmjs-fiona-godlee/