BMJ letter from LongCovid doctors.

[rvallee]

Wessely blocked me years ago. Can someone post the full thread here, or at least Wessely's? I can see all the responses and comments--just not what he's tweeted. Anyone reading the descriptions of CBT and GET in PACE, or took a look at the manuals, would know Wessely is lying his ass off, or is delusional.
.

I'll copy a few, but one thing you can do is take one of the tweets in the thread, right click on either the date (or xh ago) and open in incognito/private mode. That's how I work around it.

Good letter in @bmj_latest from doctors with #longcovid citing #RSMLive “Before we get people exercising" need "to be sure it’s going to be safe. We need proper evaluation of cardiac and respiratory function" &. "take things slowly and in a paced measure.”

No volte face. Just agreeing that exercise and GET are not the same. Taking things gradually is part of GET - that’s why it’s called graded and not ET. It’s sensible to advise people not to try and “run off” or jog through #longcovid & we need urgent research on heart and lungs

Thank you. I thought the 2007 NICE guidelines were OK. Am afraid I don’t have a clue about the next set of guidelines due out next year I believe.

The difference with pacing is that the goal is not living within limits but sooner or later to extend them. But gradual and if possible are key words. And it doesn’t have to be exercise at all. It’s activity.

The essence is to find a level of activity that is comfortable which initially may mean reducing. But then it is indeed important to try and maintain that - if possible as it says - only increasing when it is clear you have habituated to that level.

I would hardly have had 30 years of successful clinical practice in an NHS CFS service seeing >1000 patients if that wasn’t the case.

https://twitter.com/WesselyS/status/1306525021460979713

Yes. “Pushing through” is not part of GET. It is about establishing a regular baseline and then gradually increasing without incurring severe PEM and thus going back to square one. CBT is about activity not exercise per se. Neither are about getting fit.

https://twitter.com/WesselyS/status/1306523508382601216

Dear Dr Marsh. We wrote that 32 years ago and no, we wouldn’t say that now. I think doctors who are sufferers have a lot to contribute whatever illness they have-a unique perspective but not the only one. I wouldn’t have tweeted BMJ piece if I didn’t think that @ProfTonyDavid

https://twitter.com/WesselyS/status/1306281962735308803

 

[rvallee]

I hope you'll consider anonymously tweeting some of your spectacular turns of phrase in the direction of Sir Simon Himself, @rvallee – if nothing else, it would really cheer up some of the ME folk who're reading his recantations open mouthed and incoherent!

It would probably be a good time for that, the whole brigade has blocked me, but I would probably end up too angry, insult them and be blocked again. I hate liars. These people lied and people died. I hate those kinds of liars the most. Worse, they are bullies who pray on the vulnerable to elevate themselves.

But frankly the replies so far pretty much cover my sentiments well. These jerks have pissed so many people off and now the spell has been broken.

 

[Barry]

I hope you'll consider anonymously tweeting some of your spectacular turns of phrase in the direction of Sir Simon Himself, @rvallee – if nothing else, it would really cheer up some of the ME folk who're reading his recantations open mouthed and incoherent!

Probably better to keep everything strictly objective and impersonal, because he won't then be able to bleat to other doctors looking in, and they in turn will be far more likely to take notice of what is being said.

 

[Barry]

It would probably be a good time for that, the whole brigade has blocked me, but I would probably end up too angry, insult them and be blocked again. I hate liars. These people lied and people died. I hate those kinds of liars the most. Worse, they are bullies who pray on the vulnerable to elevate themselves.

But frankly the replies so far pretty much cover my sentiments well. These jerks have pissed so many people off and now the spell has been broken.

I agree. Far better to let clear, incisive, objective argument draw SW into making the case against him all too apparent to those who can be bothered to think through what is being said. Letting rip would likely repel some of that audience and allow SW to bleat as he tends to in such cases.

 

[Barry]

Good replies to SW:

 

[rvallee]

I agree. Far better to let clear, incisive, objective argument draw SW into making the case against him all too apparent to those who can be bothered to think through what is being said. Letting rip would likely repel some of that audience and allow SW to bleat as he tends to in such cases.

His own words are basically his kryptonite. And boy did he put out many over the years when he really thought he had won this.

Speaking of which people not blocked by him should really take advantage of the quotes that have been collected over the years.

https://www.s4me.info/threads/who-is-simon-wessely.9364/
https://www.s4me.info/threads/bad-me-quotes-general.8918/
https://www.s4me.info/threads/simon-wessely-research-related-quotes.1304/

Pretty sure there are other threads but my memory is closed for repairs, or something.

 

[Barry]

His own words are basically his kryptonite.

Bang on. I'm really hoping this time around he will reveal his duplicity and incompetence to his peers. Anything that helps him to do that gets my vote.

 

[Snowdrop]

And for all his saying that he wrote something 32 years ago, it's also true (unless someone can correct me for the record) that he has never ever said publicly that he has changed his thinking at all regarding his beliefs regarding ME. So the fact that he said something 32 years ago is a way of implying this?

But he has never stated as much.

So the usual vague statement meant to be interpreted however he likes when responding to inquiry.

 

[MSEsperanza]

Good replies to SW:

View attachment 12036

Not so sure about the first one.

Is it proven that there is a "biological impairment in energy production"? I think if it was, more clinicians would be interested in biomedical ME research.

His own words are basically his kryptonite

Bang on. I'm really hoping this time around he will reveal his duplicity and incompetence to his peers. Anything that helps him to do that gets my vote.

Yes. The cognitive bahavioral appoach to ME and the trials to defend it have been debunked on a scientific basis. All further trials to defend it in diverse talks and on social media only provided more evidence on the fact how bad the reasoning behind the CB approach is.

We need more biomedical research. I think it's unwise though to counter bad reasoning with other bad reasoning, e.g. claims of a specific biomedical cause that isn't proven yet and thus provide people with ammunition to support the view that pwME are being uncritical about biomedical research that isn't based on sound hypotheses or/ and reliable evidence either, or that pwMe take biomedical hypotheses for evidence.

 

[Mithriel]

Not so sure about the first one.

Is it proven that there is a "biological impairment in energy production"? I think if it was, more clinicians would be interested in biomedical ME research.

This exemplifies what he has done to ME over the years. He can use words with abandon giving them his own meanings but the patient community worries about picking the exact correct word so they do not get criticised or mocked for it.

We do not have the energy to do what we want when we want to. When we try to walk more than a few steps our muscles can't do it. It is repeating actions that have consequences; once is fine then it tails off even for small actions.

Now it is up to the scientist to explain why that happens and he has had 30 years to look. Whether it is psychological or biological the effect happens by a physical process which could have been worked out if the money had gone in the right direction.

The default position is that biology goes wrong since biology is the some cause of disease in animals who have not developed emotions or consciousness so it is up to him to prove that there is no biology gone wrong. He has never produced a hypothesis that accounts for all our problems.

As patients it is our right to say that a biological process is causing us to not have the energy to use our bodies in the way healthy can. If that is wrong then it is up to the scientific and medical community to find out the exact biological process which is leading to the effect we experience.

The BPS crew put us down by using nit picking to dismiss us without ever offering us a plausible alternative.

 

[Barry]

Is it proven that there is a "biological impairment in energy production"? I think if it was, more clinicians would be interested in biomedical ME research.

But we are forever looking on these things from our own very specific perception. I also picked up on this little presumption of the commenter, but immediately deemed it immaterial to the essential message they are trying to get people to take on board - that there is a biological impairment to people's energy system somewhere! At this level of information presentation, errors/presumptions of clinical precision such as this are far outweighed by huge benefits of getting people to understand the essentials ... it's biological and its about lack of energy in some sense - that is the essential takeaway message, and that post sends that message loud and clear. I do get frustrated sometimes with our occasional determination to throw they baby out with the bath water.

 

[MSEsperanza]

But we are forever looking on these things from our own very specific perception. I also picked up on this little presumption of the commenter, but immediately deemed it immaterial to the essential message they are trying to get people to take on board - that there is a biological impairment to people's energy system somewhere!

Sorry for being off topic but I wouldn't have commented if it had been this Tweet alone -- but it goes on:

https://twitter.com/agy_lena/status/1306604041355407360

https://twitter.com/pamela_bernie/status/1306620137907335168

Also I wouldn't have commented if the quality of biomedical research on ME wasn't one of my major concerns.

To not add further off topic comments, I' ll continue here.

Edited to add: I don't contest the results of the mentioned investigation the commenter received but the way these results are presented as established evidence for a pathophysiology in ME.

 

[Keela Too]

I don't quite understand this - a person is not seen as an interest?

The person doesn’t have to declare a potential conflict of interest.

 

[Jonathan Edwards]

"In fact I can definitively establish that. I have had an invasive CPET at Imperial that shows I have impaired systemic oxygen extraction to muscles. No oxygen=no ATP. This means my muscle cells cannot generate energy. This is in line with latest biomedical research into ME"

I would be interested to know where these ideas come from. Who at 'Imperial' is advising patients this way. I don't think inability of muscles to generate work (which is probably a better way of putting it than energy) is in line with any particular research into ME.

Inability of muscles to do work does not seem to me to be a likely origin for ME symptoms. People with muscles that can barely do anything - with dystrophies or dermatomyositis - do not have symptoms as in ME. They just cannot stand without support. They do not feel ill with it.

I do think there is a problem here, and I agree with @MSEsperanza that there is a problem with patients being fed misleading biomedical stories which are then an own goal when it comes to arguing for better science than PACE.

 

[Barry]

I don't quite understand this - a person is not seen as an interest?

To give a bit more context I have included the preceding section as well, below.

10. Interests that are not, or could not be perceived to be, relevant to the NICE committee’s work need not be declared. This could include, for example, membership of sports and recreation societies, positions in local community groups, and shareholdings in companies unrelated to NICE’s work.

11. For the avoidance of doubt, a person living with a disease or condition relevant to the matter under discussion, or who has a family member in that position, is not seen as an interest and this does not need to be declared.

I agree it is poorly worded by NICE, and might have been clearer if reworded along the lines:

"For the avoidance of doubt, if a person is living with a disease or condition relevant to the matter under discussion, or has a family member in that position, then this is not seen as an interest and does not need to be declared."​

 

[Hoopoe]

Inability of muscles to do work does not seem to me to be a likely origin for ME symptoms. People with muscles that can barely do anything - with dystrophies or dermatomyositis - do not have symptoms as in ME. They just cannot stand without support. They do not feel ill with it.

This doesn't seem like a sufficient reason to discard this finding. Insufficient oxygen extraction might occur together with other problems that cause malaise.

 

[Jonathan Edwards]

This doesn't seem like a sufficient reason to discard this finding. Insufficient oxygen extraction might occur together with other problems that cause malaise.

Which finding are you worried about discarding? As I understand it straight CPET does not show a deficit in ME. The two day findings have been portrayed as related to PEM but PEM is feeling ill as I understand it, so not an issue of ability to do muscle work. My point is that even if there is some evidence for reduced work it does not seem to explain symptoms.

 

[Barry]

Sorry for being off topic but I wouldn't have commented if it had been this Tweet alone -- but it goes on:

https://twitter.com/agy_lena/status/1306604041355407360

https://twitter.com/pamela_bernie/status/1306620137907335168

Also I wouldn't have commented if the quality of biomedical research on ME wasn't one of my major concerns.

To not add further off topic comments, I' ll continue here.

Edited to add: I don't contest the results of the mentioned investigation the commenter received but the way these results are presented as established evidence for a pathophysiology in ME.

Yes, I do accept your point here when I read the further, highly assertive, comment.

 

[Barry]

The two day findings have been portrayed as related to PEM but PEM is feeling ill as I understand it, so not an issue of ability to do muscle work

I suspect "PEM" is itself a rather nebulous thing. But my understanding, from what I see in my wife, is that PEM is more encompassing than that. Yes it most definitely includes the "malaise" aspect, feeling really ill. But it also includes - as best I can understand from my wife's explanations to me - a complete dearth of physical capability, of getting muscles to do anything much ... sit down or fall down. I have no way of knowing if that is a muscle issue itself, or failure of some other system that muscles rely on, but the end effect is the same.

 

[Hoopoe]

Which finding are you worried about discarding? As I understand it straight CPET does not show a deficit in ME. The two day findings have been portrayed as related to PEM but PEM is feeling ill as I understand it, so not an issue of ability to do muscle work. My point is that even if there is some evidence for reduced work it does not seem to explain symptoms.

In PEM I lose some of my capacity to do work. I don't just feel unwell, the body just doesn't work as well as normally. The ability to exert force decreases or so it feels, and endurance drops sharply. Instead of being tired after a 20 minute walk, 1 or 2 minutes can be enough. Instead of walking up the stairs normally, I walk more like a 90 year old. Slowly, grasping the support rails, each step taking too much effort. These are actual examples from different days. Not every PEM episode is as bad fortunately.

It also seems unwise to reject some idea because it doesn't align with what would be expected because it's possible that there are unexpected things happening in ME/CFS that nobody thought possible.