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

PS: By the way, we think you are a mental patient, dear long hauler.






(sarcasm)

 

Yes, I hope people don't try to over-analyse it and unnecessarily complicate the situation.

 

It really isn't. Advertising stopped propping up newspapers a long time ago; even when I worked in the industry years ago, it was only usually a subsidiary income stream for titles with a cover price.

A good chunk of the Guardian's funding still comes from the historic trust, but they've also persuaded a million or so readers to make voluntary subscriptions. The wider industry thought it was a loopy idea (as I suspect did many of the staff), but it seems to have had some success at least.

They publish all sorts of letters – some of them infuriating, others tiresomely worthy – but at the end of the day they're just letters. If they had to please any kind of paymaster, they'd have to do a whole lot better than this scrappy effort.

 

Sorry, will probably need to be someone else this time. I’m completely stuffed.

My advice, FWIW: keep it under 250 words and try to send it ASAP. The cut off for Saturday’s Guardian will be about 12 noon Friday. They’re unlikely to publish a response on Monday unless there is more correspondence on the same subject published before then

Good summary of the literature on harms:
https://davidfmarks.com/2021/03/10/treatment-harms-to-patients-with-me-cfs/

This was my BMJ RR on evidence of harms:
https://www.bmj.com/content/371/bmj.m4356/rr-0

Edited to add: it might be looked at as a positive that they have had to resort to writing letters to the editor like us plebs instead of being invited to pen their own opinion articles.

 

I personally think Gerada has made a huge own goal here, not just for herself but for all like-minded BPSers.

Those who matter, such as NICE, cannot fail to see this time around, what an absurd thing this is for a medical professional to say. It is clearly self-opinionated rubbish. In which case it becomes self evident that if she and her like can blatantly spout such medically illiterate BS, then the odds are she and the like have been doing so in the past, perhaps less blatantly, without people being so aware.

 

Unfortunately people seem to be ignoring or not really hearing this part of what she said, whereas I saw it as the key quote. I fear she is managing to sound reasonable to too many people, who are missing the key point. I do hope people come to understand that this is absurd, but it would involve paying a lot of attention. Is anyone paying that kind of attention?

 

Perhaps an opportunity to highlight the lack of a yellow card system, or the like, for patients to report harms... If you refuse to colect data on harms in trials, and refuse to provice a system for patients to report harms, then the absense of reports of harms is really not the same as being able to say there is no harm here...

 

I post this mainly to suggest that it can be risky to speak in absolute terms.


There was a 2017 study that followed a 3,175 people over 25 years to determine the effects of physical activity on their health.

They were divided into three categories: A) those who exercised below the guideline levels, B) those who exercised at the guidelines and C) those who exercised at 3x the guideline level.

Those who exercised at 3x the guideline level were 27% more likely to have developed coronary calcium deposits [CAC] after 25 years. Also...

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30577-3/fulltext

This is just an example of a case where "too much of a good thing may be bad for you." It also shows that "too much" can vary among individuals.

 

They seem terribly confused about the purpose of rehabilitative approaches.

Graded exercise is worthwhile as rehabilitation post-covid for patients that are NOT suffering from LongCovid, but merely residual deconditioning and pulmonary impairment.

 

I completely sympathise with feeling too stuffed to mount a campaign, been trying to find the ergs to change my bed clothes for the last week but thought I would chime in to lend moral support!

The BBC/Garner are trying to have their cake and eat it!

To quote Garner's own hyperbole.

So he said he had ME and is on the beeb and elsewhere recommending exercise in a manner which NICE have just said is not appropriate for ME and is blogging and co-authoring letters with a PACE author which push the BPS insurer lobby agenda trying to prevent the recognition of ME and brush it under the carpet with bombastic generalisations and condescending obfuscation.

But the beeb are saying its a totally different condition, which while it may be true at one level is inconsistent with Garner's own statements and shows the beeb do not appreciate what is going on, whose interests they are acting in by blinkering themselves and are just trying to save their own hides if they do.

This is effectively misinformation and the beeb have got to respond more constructively.

Whether Garner actually had ME is neither here nor there, logically he did not, because ME is what happens when you dont recover by definition. What matters is he is presenting himself as a PWME and then using his professorial position to recommend the opposite of what is now the NICE recommendation and that is a no-no.

 

I haven't been following this thread but has this been posted? (Please anyone feel free to post it somewhere better - I feel it needs a response.)

https://www.theguardian.com/society/2021/mar/11/long-covid-and-graded-exercise-therapy

@Jonathan Edwards

 

Professor Paul Garner of miraculous recovery from Corona Virus ‘long haul’ fame, co-signs a letter endorsing Graded Exercise Therapy, Guardian, 11 March 2021:

Dr Joanna Herman is right to call out the lack of care being offered to sufferers of long Covid (People with long Covid urgently need help. Why can’t we access it?, 10 March). The willingness of doctors to speak out as patients has done much to highlight the long-term effects of Covid-19.

We know that long Covid is more than one disease, all of which will need different treatments. But we do not know that graded exercise therapy is detrimental to recovery from the post-Covid fatigue syndrome. There are no such studies.

In contrast, we know that graded exercise therapy is an effective treatment for chronic fatigue syndrome (or ME), a clearly related condition. Moreover, no trials of graded exercise have shown harm to patients. We need trials of this treatment in post-Covid fatigue. In the meantime, let us not discourage patients from accessing what may be a helpful treatment, so long as it is provided by physiotherapists trained to properly deliver it.

Dr Alastair Miller Cumberland Infirmary, Carlisle, Prof Paul Garner Liverpool School of Tropical Medicine, Prof Peter White Queen Mary University of London​

Read this bit again: ‘In contrast, we know that graded exercise therapy is an effective treatment for chronic fatigue syndrome (or ME), a clearly related condition. Moreover, no trials of graded exercise have shown harm to patients.’

Time for a counter-attack, I reckon.

 

Not strictly true. A close relative works for a newspaper group (not a journalist). It depends on the paper & they have changed over the years but advertising is still very important to at least some.

 

MEA Statement: Graded Exercise Therapy is not a safe and effective treatment for ME/CFS or Long Covid
https://meassociation.org.uk/2021/0...effective-treatment-for-me-cfs-or-long-covid/

 

Presumably the authors would also state that we need trials of ingestion of bleach as a potential treatment for Covid. And in the meantime, let us not discourage patients from accessing what may be a helpful treatment.

 

I may be wrong but as Peter White claims to have retired is it still appropriate to say "Prof Peter White Queen Mary University of London"?

Shouldn't the word Emeritus at least appear?

 

What I found most interesting about the letter was the suggestion that GET should be rolled out in long-Covid clinics before any clinical trial could test its efficacy. That seems wrong to me.

 

Tweet from AfME.

"We'll share our letter to the Guardian here in due course if it's not published; we know @MEAssociation @PhysiosForME @LongCOVIDPhysio have written too. We're working with a number of journalists to ensure the voices and experiences of #pwME #MECFS are heard."

Code:

https://twitter.com/actionforme/status/1370386001860964355

 

No, the title is for life. The position changes but that comes after:

Prof Peter White
Professor Emeritus in Blablabla

 

Her own public timeline on twitter suggests she did not exercise for many months while dealing with what she called something like "horrendous fatigue" that she had never experienced before.

She exercised after improving, not the other way around. So did Garner. Their own public statements contradict them. If only that mattered or if people cared about consistency and integrity.