Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

The PG quote that most stands out to me is this one:

It's very important that research in post-viral syndromes is not shut down and it's not shut down by adverse advocacy groups that believe that the disease is permanent.
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Why would anyone want to shut down research just because they think a disease is permanent? It doesn't make any sense at all! I guess it's all part of the smokescreen they are creating.
 
Lucibee said:
Don't know whether anyone else has mentioned, but a few things about the Sally Singh et al study (BMJ Open 2020) https://bmjopen.bmj.com/content/10/12/e040213
Re: "Apparently nearly 90% of doctors involved in managing Long Covid patients believe that an exercise programme is an important part of the recovery programme."

That study was a survey of >1000 HCPs that was done in April 2020 about the potential long-term effects of hospitalisation (including admission to ICU) in those with severe COVID. Most would not have known about the existence of Long Covid at that time - so it's opinion based on post-ICU rehab practice.
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I had a very quick look at that paper in this post: https://www.s4me.info/threads/paul-...les-and-other-media.15629/page-57#post-337451

As you said, it didn't seem that relevant and I couldn't find the exact figures quoted in the report either. It was only a very quick look though so I may have missed something. It seemed a strange thing to bring up, other than in the hope it might be useful for PR spin.
 
Lucibee said:
The PG quote that most stands out to me is this one:



Why would anyone want to shut down research just because they think a disease is permanent? It doesn't make any sense at all! I guess it's all part of the smokescreen they are creating.
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The spin is that only BPS research is valid. As usual the problem is that no one points out or cares about it being false and absurd. They obviously know that we are behind most of the research, either in directly funding it or forcing institutions to fulfill their obligations, and that is precisely why they try their hardest to shut down all research. They also know that our number one demand for decades has been research funding. And as bullies go, they DARVO and accuse us of the very thing they are doing, simply because they can get away with it without being challenged by anyone.
 
Here's what I would write to the BBC.

I watched with horror and dismay the very biased item on Long Covid on Newsnight. The reporter had clearly decided to base the story on one man's claim that his recovery from long Covid was achieved through overcoming his fear of exercise and by changing his thoughts. To base a story on a single case and that individual's interpretation is completely unscientific. It is just as likely that he was recovering anyway by the time he tried that approach. It certainly seemed so from his tweets.

Post viral fatigue is a well recognised phenomenon following many viral infections. There has not been time for research to discover the best way of treating people with long Covid. There are already reports of some people gradually getting better, and others with ongoing problems due to organ damage and the after effects of intensive care treatment.

It is the group in between, with no detectable organ damage, but whose symptoms don't resolve in a few months or a year or two as Paul Garner's did, and who have the ongoing problem of post exertional malaise whenever they try to increase their activity we need to consider here, and these are the ones Dr Shepherd was referring to when he drew parallels with ME/CFS.

NICE published a draft ME/CFS guideline last November. Their detailed evidence review of multiple trials of graded exercise and CBT as treatments for ME/CFS found all studies were low or very low quality. None of the trials, including the PACE trial referred to, showed any significant objective or long term benefit from either treatment. The expert committee therefore recommended neither method be used to treat ME/CFS.

The so called 'controversy' is a result of the people who did those trials refusing to accept that the slight short term 'improvement' on subjective questionnaires was not either sustained or supported by objective evidence and was no better than placebo effect. Patient objections to these treatments are based on sound scientific review of the evidence, and the fact that large patient surveys show that many patients with ME/CFS get much sicker when they follow GET programs.

As we have seen, there is now clear evidence that the CBT/GET approach has been shown not to be effective treatment for those with ME/CFS like symptoms that include post exertional malaise. This may well be the case with a subgroup with Long covid too.

Nobody knows yet whether exercise based treatment is appropriate for everyone with long Covid. The doctor featured who claimed exercise is helping her patients has not, as far as I know based this on any research. At this early stage some of her patients will be well on the road to recovery anyway, regardless of rehabilitation treatments, and others with lung damage may be helped by her treatment. Others may not, and some may be harmed.

I understand Dr Shepherd's interview lasted about 15 minutes, in which he explained the basis of his comments about ME/CFS organisations being able to help some people with Long covid. It was highly irresponsible of the BBC to pretend to 'balance' by taking clips so short as to be meaningless from Dr Shepherd's interview, immediately following the second one with Prof Garner's completely unfounded 'explanation' of his recovery.

The mischaracterisation of hundreds of thousands of sick people with ME/CFS as 'adverse advocacy groups' who want to 'shut down' good research and saying you should only listen to those who have recovered, is gaslighting of the worst sort. I am shocked that the BBC allowed that comment without any chance for anyone to rebut it.

Please provide an opportunity for people with long Covid who have not recovered to put their perspective, and show the whole of Dr Shepherd's interview on a future program to redress the balance.

This is not something to be taken lightly. That broadcast will have been watched by millions who will now be telling their family members, employees and patients with long Covid that the 'experts' on the BBC report has told them that they need to stop being afraid to exercise and to do graded exercise programs. This risks making many many thousands much sicker. It will also make it harder for people with ME/CFS to get the help, understanding and support they need. That is highly irresponsible of the BBC. Shame on you.
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Edit: Oops, left out my section about NICE and PACE. I'll try to retrieve it and add it. Added in blue.

Second edit. Much shortened version submitted to BBC complaints. See my later post.
 
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Lucibee said:
Don't know whether anyone else has mentioned, but a few things about the Sally Singh et al study (BMJ Open 2020) https://bmjopen.bmj.com/content/10/12/e040213
Re: "Apparently nearly 90% of doctors involved in managing Long Covid patients believe that an exercise programme is an important part of the recovery programme."

That study was a survey of >1000 HCPs that was done in April 2020 about the potential long-term effects of hospitalisation (including admission to ICU) in those with severe COVID. Most would not have known about the existence of Long Covid at that time - so it's opinion based on post-ICU rehab practice.
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At one point surveying medical professionals would have lead to the conclusion bleeding using leaches was a good idea. It doesn't seem like a good way to draw a conclusion about the validity of a treatment especially as you point out when something is new and there is no experience.
 
Lucibee said:
The PG quote that most stands out to me is this one:



Why would anyone want to shut down research just because they think a disease is permanent? It doesn't make any sense at all! I guess it's all part of the smokescreen they are creating.
Click to expand...

Reading between the lines what I guess he is saying is research into GET and LP shouldn't be shut down (hence the comment on recovery). But I would argue funding such research is a waste of money (and unethical) unless there is a good reason to believe it would work - which there is not (along with considering the potential harms). As well as the fact that those who are most likely to do such research have proved themselves incapable of running a trial that can give meaningful results.
 
Lucibee said:
Don't know whether anyone else has mentioned, but a few things about the Sally Singh et al study (BMJ Open 2020) https://bmjopen.bmj.com/content/10/12/e040213
Re: "Apparently nearly 90% of doctors involved in managing Long Covid patients believe that an exercise programme is an important part of the recovery programme."

That study was a survey of >1000 HCPs that was done in April 2020 about the potential long-term effects of hospitalisation (including admission to ICU) in those with severe COVID. Most would not have known about the existence of Long Covid at that time - so it's opinion based on post-ICU rehab practice.
Click to expand...

That is an interesting point because, if that was the study referred to, it was used in such a way it reinforced Garner and Singh's GET statements but was out of context when applied to a discussion of long covid which was the point of the piece which started with "how do you treat long covid?"
 
Thanks, I found the complaints section and have submitted my complaint. Here's the wording I used:

This Newsnight item on Long covid was seriously misleading. To build a story on a single case and his unscientific interpretation of his recovery is irresponsible. It is likely he was recovering anyway as many with post viral symptoms do after a few months.

When Dr Shepherd drew parallels with ME/CFS, he was referring to those who continue to get sicker whenever they try to increase their activity. The doctor who uses graded exercises had no research evidence to support her claims.

NICE published a draft ME/CFS guideline last November. Their detailed evidence review of multiple trials of graded exercise and CBT as treatments for ME/CFS found all studies were low or very low quality. None, including the PACE trial referred to, showed any significant objective or long term benefit from either treatment. The expert committee therefore recommended neither method be used to treat ME/CFS.

The so-called 'controversy' is a result of the people who did those trials refusing to accept that the slight short term 'improvement' on subjective questionnaires was not either sustained or supported by objective evidence and was no better than placebo effect. Patient objections to these treatments are based on sound scientific review of the evidence, and the fact that large patient surveys show that many patients with ME/CFS get much sicker when they follow GET programs.

The mischaracterisation of the many thousands of sick people with ME/CFS as 'adverse advocacy groups' who want to 'shut down' good research and saying you should only listen to those who have recovered, is gaslighting. I am shocked that the BBC allowed that comment without any chance for rebuttal.

Many viewers will now be telling their family members, employees and patients with long Covid that the 'experts' on the BBC say they are just afraid to exercise. No research evidence supports this. It risks making thousands much sicker. Please redress the balance by showing the whole of Dr Shepherd's interview.
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So...just because he doesn't have one of the cardinal symptoms, exercise intolerance, and presumably he doesn't have PEM either, as you can't beat PEM by fighting it, I know, I tried for years, and years, he thinks that still means that he had ME, regardless.

The man is a ........
 
Mithriel said:
Conspiracy just means that that more than one person works together for a common goal. It only became an insult when the CIA set out to fight researchers who felt that Oswald did not kill Kennedy on his own.

In the ME community we have reached the point where we need to be convinced that there is no agenda against us since that is the way it looks. It is not different from having an enquiry into why certain groups are more likely to get covid or good housing or whatever.
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An inquiry into why pwME are frequently maligned, the lack of research funding, the lack of medical training re this disease etc., is a very good idea. However, from what I've seen of inquiries, they're good for expense accounts, and may produce important info, but do they improve things in a meaningful way?

On the other hand, there does seem to be a concerted effort to keep pwME under control, negatively portrayed, streamed into one form of treatment, restrict in-depth testing etc.
 
@Trish

...the slight short term 'improvement' on subjective questionnaires was not either sustained...
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Technically it was the difference between the arms that was not sustained. That is, neither CBT nor GET offered any advantage over APT or SMC in the long term.

And that is using their much more generous post-hoc definitions. If you use their original protocol definitions, there is not even any apparent advantage to start with.
 
Sean said:
Technically it was the difference between the arms that was not sustained. That is, neither CBT nor GET offered any advantage over APT or SMC in the long term.
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Yes, this is important. the other groups "caught up" in essence, at least in terms of how everyone answered the questionnaires. So no differences were apparent at follow-up. But that doesn't stop these investigators from then deciding that the most important outcome is that the benefits were "sustained" for their interventions--even tho as a clinical trial the results were null. Like the GETSET follow-up--null results but they reported a success because of "within-group" results. it is hucksterism.
 
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