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

Carole Bruce on Twitter: "I hear a rumour that Prof Garner has secured large grants for studying GET for #LongCovid now. Despite all the evidence against it for #ME they persist with fervour. It’s tragic." / Twitter

Carole Bruce on Twitter: "Rumour is from a very reliable source." / Twitter

edited to add that the US says it is going to spend 1.15 billion on studying long covid.

NIH launches new initiative to study “Long COVID” | National Institutes of Health (NIH)

 

But it must be 'individualised', if we have learned anything these past few yrs it's that all treatment simply must be individualised & agreed apon in collaboration with the patient

Thats interesting @boolybooly what does your 'mother' do to it that helps do you think?

 

Should we distance ourselves from LC now that PG has taken himself to a whole new level of ignorance?

We should focus on ME.

 

also speculation that Brendon Stubbs might be involved
https://twitter.com/brendonstubbs?lang=en

(only followers can view his twitter feed)

 

Why medical doctors speaking in their capacity as medical doctors giving misleading medical advice on national television is not a good idea:

https://twitter.com/user/status/1372879535105007616

 

Given that Long Covid sufferers are well organised and many use social media (and other platforms), perhaps they will organise a patient boycott of the study.

 

Not in my opinion, for two main reasons. One, it would be highly unusual if a significant portion of LC patients didn't turn out to have ME (as judged by their symptom set) given that practically all other viral infections leave people meeting ME diagnostic criteria, and two, because we can prevent harm being inflicted on those LC patients who have PEM by sharing our knowledge and hard-won expertise in highlighting the gaping holes in the theories of the BPSers.

 

It seems there is still communication work to be done to help the world at large know that PwME have many symptoms similar to covid and have done for a long time. You'd think for listening to all the LC opinions that ME truly is just being tired all the time. Although I expect there is more nuance to that than I'm indicating.

 

But PG has claimed he fit the diagnostic criteria of ME and cured himself with exercise and positive attitude. He's become a freak'n poison towards pwME.

I understand preventing harm to pwLC, but why has it become our duty to reach out to them? This may come across as insensitive, but I just don't get the concern right now with what PG is advocating.

 

Reliable source Nigel Speight I think from an early hours Twitter review when getting heat.

 

I don't see why the antics of PG should have any bearing on what we do or don't do in relation to those suffering LC. Just because one person who suffered some post-viral symptoms that lasted longer than he expected, and who now believes that magic thinking made him better, is spouting rubbish from his position of authority doesn't mean that I'm not prepared to work with, and for, LC folks, particularly where it can be mutually beneficial.

I've not suggested that it is our collective duty. My concern for pwLC, and especially those who I believe have ME from Covid, is not affected by PG and whatever he advocates. Would we want to be abandoned by potential allies just because Sharpe, Wessely or any other BPSer has made one of their typical worthless utterances? You seem to be equating PG with all pwLC, which seems to be very unfair.

 

How do you believe they have ME? I still feel it's too early to assume that they do. Post viral states can last a few years. My point was that if LC eventually start to improve and transition into GET and recover, then what? We are back to defending ourselves that GET is harmful for pwME?

 

They meet the criteria, both diagnostic and research. What other option is there?

Will some improve and/or recover? Sure, of course they will, just as some pwME improve and/or recover. But it would be incredibly strange if every pwLC recovered, and would be worth investigating alongside pwME to find out the difference if it did happen.

Well, we will still need to do that anyway so I don't understand the point being made, sorry.

 

Diagnostic criteria are a con really. Teasing out a rational analysis is tricky but I ended up convinced that diagnostic criteria are never more, at best than a rough approximation to rational argument. A diagnosis is really a prediction rather than a description. For things like lupus and ME the prediction is very much a statistical one about future progress. The concept of ME is really about long term profile. In sense it is a diagnosis that we can only expect to make in retrospect.

I think there is an important lesson that illness after Covid may be re-illustrating, having been well displayed by EBV and Dubbo. Although self-limiting post-viral illness and ME/CFS ,may meet similar criteria and be indistinguishable thereby be a crucial difference which determines the long term nature of ME.

We should expect, in line with Dubbo,, maybe 80-90% of 'LongCovid' patients (those without lung scarring) to be fairly well within 18 months. Maybe what we think of as ME is an additional failure of return to normal following a monophasic downswing that has the same characteristics-including PEM. Fluctuations from week to week with relapses may still fall within a monophasic recovering envelope.

 

I think there's a lot of sense in this, but we still need ME as an interim diagnosis.

Partly because it tells the patient what they need to avoid doing (trying to exercise or work themselves better), and partly because it's a clear signal that their lives are changed significantly for the foreseeable future and they need to adjust accordingly. Those assumptions give patients who're likely to recover the best chance of doing so as quickly as possible, and with as few setbacks as possible.

Now we just need clinics where, instead of being prescribed GET-Lite or simply being discharged, they are helped through the practicalities of making those adjustments. Including, if they want it, a form of psychological support tailored to their needs, rather than a regimented, fixed-term training course in how to fix their faulty thinking.

 

I can see that's true from the medical perspective.

This is true from the patient's point of view. The early stages when everything in your life has been thrown up in the air can last avery long time. People can be desperately struggling on for months or years.

How they manage their condition in that time might well have a significant effect if their quality of life, let alone ability to look after themselves etc further down the line. Especially with the modern day obsession with "rehabilitation".

Not only that but also in terms of managing employment, finances and both professional and personal relationships.

I think there are quite a few people here who would have done things differently if they had known they chances were they were going to be sick for decades. Different choices that would have left them better off today and that, in turn, affects how much help they can afford to pay for.

That is precisely what's needed. Somewhere & someone to help you plan for the worst even while you hope for the best.

 

Even those with lung scarring will only suffer pulmonary related symptoms, not ME in general. Such pulmonary issues can reduce exercise capacity, but don't actually cause fatigue or other ME symptoms beyond that.

 

A knowledgeable clinician would most likely give a dx of PVFS for the first 2 years rather than jump on the short six months requirement. The ME clinician with more than 20 years experience that I saw felt this was a good timeline, and would r/o other possibilities thereafter before an ME dx was given.

 

Do the data suggest that those with extended post-viral syndromes that will ultimately self-resolve have a PEM that parallels the PEM in patients whose conditions don't self-resolve and get classed as ME?