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

I think this is the central journalistic flaw and why it was a fundamentally biased piece.

Of course, case studies and interviews are a really powerful way to communicate. But if you're going to tackle controversial area you need a case study from both sides. Instead they started with Paul Garner, and closed with his quote that "it just doesn't fit the biomedical model".

 

Exactly. A clip of Emma Shorter's powerful testimony would make an enormous difference to the tone of the piece.

 

Action for ME: Response to Newsnight item on treatment of long Covid

https://www.actionforme.org.uk/news/response-to-newsnight-item-on-treatment-of-long-covid/

 

I've never been shy of criticising AfME in the past but they have really raised their game recently.

What really upsets me about news stories like the one on Newsnight is how it affects the way I am treated by people who know me. It pains me to think of friends and family saying "Did you see Newsnight last night?" etc.

Yes, exactly the same with BBC Today Programme when they've had BPS enthusiasts on. I recall the Newsnight journalist in question doing another piece on Covid which featured Sir SW and Dame CG. I can't remember what they were babbling on about but raised my concerned about her connections.

 

I was told that the majority of people who develop ME and will recover do so within the first year.

So, even if we ignore the fact that Garner doesn't seem to have experienced the post exertion difficulties (particularly with aerobic exercise) that is the hallmark of ME, he was well within the spontaneous recovery period anyway. So he had an excellent chance of recovery without any treatment at all.

This makes claims that his approach "cured" him even more questionable.

Something that's being glossed over.

 

Not giving up on potential uses for those specialist clinics and treatments easily are they ?

 

Thanks Adam.

This seemed like a pretty well done piece of propaganda that will be viewed by a lot of people.

Auto-transcript:

 

We've previously seen how things like this at the BBC can encourage editors at newspapers to go further, and with NICE coming up this should be another reminder of the sorts of way that the media can avoid addressing real concerns and instead turn disputes around ME/CFS into stories about personal comments on-line or the matter of whether things are 'all in the head', psychological vs physical, whether cognitions can affect health, etc. Anyone looking to defend work like PACE knows that this is a useful tactic for them and will be looking for any excuse to use it.

So the 'huge controversy' over how Garner described his recovery is apparently noteworthy? This glosses over all the details that we knew would be ignored, but to me still seems like another reason to think that responding to Garner's blog was unlikely to be useful to anyone but Wessely/Vogt/etc. Anything that looks like a clash of anecdotes is only going to help those who are best connected to those with power and influence.

That is supported by a quote from this tweet:

https://twitter.com/user/status/1366757628702056450


I didn't read that as an accusation that Garner was stomping on the vulnerable from a position of power but as a comment on the Kelland piece and Garner's tweet about it rather than a comment on Garner. @Adrian ?

On PACE:

That doesn't help people understand why feelings run so high. It effectively creates a misleading impression though.

Which "adverse advocacy groups" believe ME/CFS is permanent?

It looks like this is based on this journal article, though it doesn't say it's a survey of those running Long Covid clinics: https://bmjopen.bmj.com/content/bmjopen/10/12/e040213.full.pdf

On participants it says "The survey was available to participants from 9 April 2020 to 15 April 2020. Seven days’ access covered a bank holiday, scheduled workdays and a weekend which maxi-mised opportunities to complete the survey. It was distrib-uted to members of the BTS [British Thoracic Society] via the societies’ e-newsletter and healthcare professionals via the BTS Twitter account. A reminder email was sent to BTS members 6 days later; a reminder to participate was retweeted by society members and the BTS encouraging both BTS members and health-care professionals to participate and to share the survey with colleagues. The survey was not restricted to UK-based healthcare professionals, although the country of prac-tice was noted on the survey."

This probably isn't important, and I don't see why the survey in this paper would be seen as particularly important, but the only 87% I could find was: "The impact on employment was also rated highly, including advice on returning to usual employment (87%), where to get financial support advice (75%) and advice on returning to alter-native employment (74%)."

I couldn't see 'intensifying' in there when I was looking for the exact section being referred to.

They say things like:

Maybe some do. If it's from the UK I expect it's quite likely to make things worse.

 

One more point - I think it's a mistake for Shepherd, or anyone else, to talk as if patients have any real expertise for helping Long Covid patients manage their conditions. I don't think that there's good evidence that we do. Even for other forms of PVFS we really don't know what's best in the early stages of illness.

Saying that, I'd have hated to be in Shepherd's position with this, and I'm sure they will have avoided using anything he said that usefully challenged their narrative.

 

Textbook manufacturing consent.

 

Exactly.

If I have a criticism of ME charities in the past it has been that I think they're over optimistic & therefore potentially misleading about recovery.

Even up until the last year or so I have read that most patients recover or at least improve in time. That's from both MEA and AfME.

 

It is definitely a fact that we do understand it better than anyone, at least in general terms. And it's not even close, especially for those who somehow bizarrely insist, INSIST, that this is just fatigue and obviously meaning motivation. Which is apparently the standard for the behavioral crap: it's "better" than nothing, which it actually isn't but it's their argument for keeping their junk.

Of course that's just too weird, patients knowing better than "experts" is a bit too much to accept. Even if true. But it's a true statement nonetheless. It's explicitly the fact that we know next to nothing and yet still understand it better that is the problem, caused by the fact that medicine has essentially understood exactly nothing about it, by choice. And that the fake experts like Wessely and Sharpe have beliefs that push them further away from understanding than people who know nothing at all about it, their ideas are fixed, immutable and tied to their self-interest.

But this continues the weird trend where medicine pretends to acknowledge that patients are the experts on their conditions, at least to some degree. But not us. Because reasons, mainly having to do with the fact that this means that medicine is failing miserably. Which it is, but that's just, I don't know... vexatious, I guess.

 

Overcoming your fear of exercise, and going out there and doing it will cure you. Not true!

During several years of gradual onset following an EBV infection, I vigorously exercised 4 or 5 times per week: aerobics, dance, running, etc. I became increasingly worse with orthostatic intolerance, unusual fatigue, dizziness etc. A month or two before I became much worse, I was still doing vigorous exercise. This so called treatment for ME did not prevent me from becoming ill.

For many years I walk about 30 minutes per day when I can. This has not cured me. Neither has CBT.

 

If you're saying that many patients are aware of problems with the claims coming from people like Wessely and Sharpe, then I'd agree. But I meant that we don't know how Long Covid patients should respond to their own illness. eg: while we're aware of the spin and misrepresentations surrounding GET that's not the same as knowing whether or not a Long Covid patient might improve with a form of GET themselves. Things that a long-term patient finds useful are less likely to be appropriate for a patient who was newly ill and facing a high chance of natural improvement. I think that warning them of the way evidence has been spun is likely to be useful but that doesn't lead to useful knowledge about how any individual patient should be managing their symptoms.

 

Though I agree, indeed so little yet has any evidence base in relation to ‘long Covid’, we do need to be making a noise about there being no evidence for exercise being a universal panacea for post viral conditions of any sort and that pointing out people experiencing Post Exertional Malaise should be very cautious in relation to exercise.

The BPS devotees are also effectively drawing parallels to ME/CFS and advocating exercise on the basis of PACE and related evidence, so we need to be saying whether ‘long Covid’ overlaps with ME or not this is appalling research. We need to demand adequate science not imposition of personal beliefs.

 

Exactly DokaGirl. Since the start of the illness (12 years ago), I have never stopped taking walks several times a week. At the beginning it was 45 min., but it made me so sick (PEM), that I had to reduce to 30 min. On those days, I then have to lie down for the rest of the day. This is the reality.

The exercise never cured me, period, even if it displeases
to those who prefer their unproven hypotheses.

 

Can I ask: Were you doing this independently of any medical advice or direction? Or was it part of a treatment plan?

Needless to say please ignore if such things are not for public consumption.

 

Interesting. I need to re-watch but I think I recall some comment about "attacks" "militant patients". To me the remarkable thing was the way the BPS shysters managed to deflect the argument. We know now that NICE downgraded the contentious studies [PACE] and we know they wouldn't release the PACE data - but those aspects weren't raised - just the militant patients.

I hadn't realised the journalist had links to BMJ.

Might be worth re-watching and complaining to the BBC if the reporting wasn't balanced.

 

If you hold those views then it may be worth complaining --- but yes if it's contrary to journalist/BBC code then that's relevant.

I know someone who's a retired journalist might ask - might not get a reply though!