British Medical Association article: Long Covid - we've been here before, 2021, J. Trueland

Splendid article with interviews with Nina Muirhead, David Strain, Charles Shepherd and Amy Small. Thank you to those who contributed!

When it was becoming clear that COVID-19 was a serious issue early last year, Nina Muirhead (pictured) had a strong suspicion about what would happen next.

As a doctor who had developed ME/CFS following an attack of glandular fever four years ago, and in common with others in the scientific and ME patient community, she predicted that there would be a sub-set of people who, like her, would still be suffering months or even years after contracting the virus.

‘I wrote to Professor Whitty [England’s chief medical officer] and Sir Patrick Vallance [chief scientific officer] back in March saying there’s going to be a long COVID, and maybe there should be a health warning put out about this – maybe people should be advised of the long-term consequences, maybe we could do a study.

‘But they were so overwhelmed with fighting the big fire [acute COVID], and because ME is so misunderstood by the medical profession, they didn’t have the same end of the binoculars as I do. They didn’t see it coming in the same way.’
 
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Disappointing that there is no mention of severe ME/CFS or the fact that many of us don’t improve whatever we do.

I also didn’t like “physical v psychiatric” framing:
Physical v psychiatric
ME was renamed and redefined as chronic fatigue syndrome in the 1980s, says Dr Shepherd, and there was an ‘intense’ medical debate about whether it was physical or psychiatric.

‘I suppose in simple terms that psychiatry won the day at that point, and convinced an awful lot of people that CBT [cognitive behavioural therapy] and graded exercise was the answer, because all that was happening was that patients were getting a viral infection, they were getting abnormal beliefs and behaviours and becoming deconditioned and that was the solution.
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But otherwise quite good.

Dr Strain:
‘Prior to COVID, I was already working on chronic fatigue syndrome, and pre-COVID it was very, very difficult to get anyone to take an interest in either research, or data evaluation or to do studies into chronic fatigue syndrome, in the UK at least. I put grant applications in to do work into the underlying causes of CFS, pre-COVID, and they were commonly side-lined as low priority; now exactly the same grant applications are being funded.
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I’d be interested to know what grant applications he had turned that have now been accepted.
 
Re David Strain, there's a little more about his research interests in this article, from December, in the Biomedical Scientist:
"In the world before COVID I was part of a multidisciplinary team that was looking at chronic fatigue syndrome. That’s a post-viral myalgia that causes all sorts of problems for a small proportion of the population,” he says. “We very quickly realised that there is something very similar going on with COVID and so tried to keep that work going. I was already looking at doing some research into chronic fatigue syndrome, particularly at the associated muscle wasting, which is much like the muscle wasting we see in older people."

Strain’s pre-COVID research interest focused on the microcirculation in the human body’s tiniest blood vessels, which are responsible for delivering all the necessary oxygen and nutrients to the muscles. Since the onset of the pandemic, he has continued to look closely at the microcirculation. “When we think about the blood supply, we tend to think about the bigger vessels,” he says. “They’re effectively the motorways of the body. But my focus has always been on the cul-de-sacs – the bits that get you from the motorway to your house. That’s the bit of the body I have always been interested in and we were working on this hypothesis that chronic fatigue syndrome was caused by a lack of perfusion in those vessels to the muscles and other tissues, which resulted in the muscle weakness and general tiredness and lethargy that we see.
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Robert 1973 said:
Disappointing that there is no mention of severe ME/CFS or the fact that many of us don’t improve whatever we do.

I also didn’t like “physical v psychiatric” framing:


But otherwise quite good.

Dr Strain:

I’d be interested to know what grant applications he had turned that have now been accepted.
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Hi Robert - I agree - I did make it clear in the interview that I'm a 'lucky one' and that many more would not be able to return to work at all or even get out of bed (perhaps the author considered that message might be a bit soon for post COVID and I know she was constrained by word count).

The ME/CFS hand that I have been dealt and the support that I have had has been so lucky and I am grateful every day.

I have missed out on a lot of fun times with my young children that I will never get back. It is probably the biggest misconception that patients have power over how ill they are. I will keep fighting for better recognition of this disease. We don't say to our other patients with severe autoimmune or inflammatory conditions - "why is your condition so severe and what have you done to make yourself worse and its up to you to get yourself better".

I also can't wait to put the physical vs psychological argument to bed. Many doctors still don't know that they don't know about this disease.
 
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Thank you Nina for your contribution to this article. I think it's a really important message to get across to doctors - that it's convalescence they need to focus on, not rehabilitation. That people who have long Covid symptoms need to take time out to rest properly in the early stages of what might turn into ME.
 
EducateME said:
Hi Robert - I agree - I did make it clear in the interview that I'm a 'lucky one' and that many more would not be able to return to work at all or even get out of bed (perhaps the author considered that message might be a bit soon for post COVID and I know she was constrained by word count).
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Hi Nina, Thanks for your reply and thank you for all the positive work you’ve done. I didn’t mean to be critical of you. Not at all. I just find it frustrating if/when people get the impression that if only people adopt the right approach their ME will improve. I wish I’d been given better advice (the sort of advice that you have been giving) but I don’t know if my prognosis would have been very different if I had been. Maybe it would. Maybe it wouldn’t.

I also wish that someone had been able to tell me that I might never recover, or significantly improve, and given me the support I needed to help me deal with that. Instead, I was told that I would get better, and then I was left to deal with the enormity or realising that I was probably going to feel very unwell, and be severely disabled for the rest of my life, all on my own, with no medical or psychological support.

I appreciate that this isn’t what people with long covid or PVFS want to hear, but I think we need to be honest. Most people will probably recover within 2 years. Pacing probably maximises someone’s chances of recovery or improvement. But some won’t recover, even if they follow the best advice, and they need to be helped to deal with that.

The BPS brigade would probably argue that you can’t tell patients the truth because it will make them anxious and that will make their ME worse, but I think we all know that’s nonsense. I wonder if they think doctors should lie to MS, Parkinson’s or Cancer patients for the same reason. They may well do!

EducateME said:
I also can't wait to put the physical vs psychological argument to bed. Many doctors still don't know that they don't know about this disease.
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I agree we need to try to get past the argument of whether it’s perpetuated by unhelpful beliefs or “all in the mind” but, even within that argument, framing it as “physical v psychiatric” is inaccurate and unhelpful in my view. Genuine psychiatric illnesses are every bit as physiological or organic as Parkinson’s, MS or ME. Again, I appreciate that that this was probably the author’s choice of wording rather than those who were interviewed.

[edit: autocorrect typo]
 
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Robert 1973 said:
I also wish that someone had been able to tell me that I might never recover, or significantly improve, and given me the support I needed to help me deal with that. Instead, I was told that I would get better, and then I was left to deal with the enormity or realising that I was probably going to feel very unwell, and be severely disabled for the rest of my life, all on my own, with no medical or psychological support.

I appreciate that this isn’t what people with long covid or PVFS want to hear, but I think we need to be honest. Most people will probably recover within 2 years. Pacing probably maximises someone’s chances of recovery or improvement. But some won’t recover, even if they follow the best advice, and they need to be helped to deal with that.
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I've been thinking a lot about this and this is exactly what I do in my ME/CFS Facebook group, where people with long covid are overrepresented due to the current situation (and it being a relatively new group). I don't go around posting this in every Covid group but when they join my group I assume they are the ones who want to be informed.

So I usually give them a comparison with other viruses, mostly EBV-related PVFS and what studies showed about what percentage got better at 6, 12 or 24 months and how many didn't. And that if they are still ill at 6 months and meet the "chronic" criteria, it doesn't mean they cannot get better in 1-2 years but there is also a chance that they won't. And of course I always start this with a big "if this is the same as...".
 
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Not criticising anything, I think it's a great piece.

Robert 1973 said:
The BPS brigade would probably argue that you can’t tell patients the truth because it will make them anxious and that will make their ME worse, but I think will know that’s nonsense. I wonder if they think doctors should lie to MS, Parkinson’s or Cancer patients for the same reason. They may well do!
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I agree. While hope is good, false hope is a negative, toxic thing. Sooner or later the person realises they've been lied to, however well intentioned the lie, that reduces their hope for a good outcome significantly plus leaves them feeling like they've been betrayed and the severity of their condition & the suffering caused trivialised to some degree. That destroys trust between patients and healthcare professionals.

I recently read somewhere that someone (possibly the WHO?) when discussing long covid / PVFS using the 3 Rs argument. Rest, rehab, recovery.

Where's convalesence in the 3 Rs? Forget the sound bites. When something doesn't work or we don't know what we're doing then you go back to basics & what you really do know helped. Getting people to convalesce didn't cause panic, stress and undue worry in the 40s & 50s so why should it today?

Instead recognising the need for convalesence & supporting those who need it will take some pressure off patients and allow their body the time it takes to recover. 6 months or a year convalesence isn't necessarily what anyone wants to do but it's a lot better than life long disability.
 
I have huge respect for Charles Shepherd, but if this is really what he said & thinks (from the article)
‘But now I think the clock has turned completely the other way and we have now, I think, got general acceptance that we are dealing with a medical problem.’
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Then I must be living on a different planet, because this has not been my experience, in any regard.
 
JemPD said:
I have huge respect for Charles Shepherd, but if this is really what he said & thinks (from the article)
Then I must be living on a different planet, because this has not been my experience, in any regard.
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The response from medicine to LC frankly shows the exact opposite, that all the progress we hoped we were doing was actually mostly an illusion. It can pay off with LC, it set the ground for the NIH to be able to do it right, but without LC we were fully stuck there for the long run and I'm less sure over time whether LC will even do it.

Psychosomatic ideology may as well be foundational to medicine judging by how dearly physicians hold on to it. I'm very cynical and I expected better from medicine, I did not think they could screw it up this bad. And there's probably a lot more failing on the way until the first bits of progress happen. One thing for sure, this really settled this as the worst failure of expertise in human history. It's in a class of its own by now, so far above all the other failures.
 
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Nightsong said:
Re David Strain, there's a little more about his research interests in this article, from December, in the Biomedical Scientist
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I'm glad someone's continuing the work on microcirculation. It's one of those avenues that probably deserves to be looked at in more detail than it has been, even though using imaginative techniques to show clear patterns in a good number of patients is still unlikely to explain the underlying cause. Knowing that it's important – or not important – is still really useful.

Same as reducing glucose in the diet. Long Covid patients have reported it as being helpful and pwME have known about it for years, but I've neither seen a study on it nor read a good explanation based on existing knowledge. What proportion of us find it makes a difference? If some do and some don't, why?
 
rvallee said:
The response from medicine to LC frankly shows the exact opposite, that all the progress we hoped we were doing was actually mostly an illusion.
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The snag as I see it is this - there is no authority that can or is willing to step in and put an immediate stop to therapies that are dangerous. Especially puzzling for countries like the UK where there's a public health service.

Less focus on job protection and careers at the expense of the public purse and more on treatment efficacy and patient safety.

I also believe there should be penalties for those who deliberately mislead about the efficacy of treatments. If someone does inadvertently mislead then there should be penalties if they refuse to retract and set the record straight.
 
If Strain is involved with the Devon CFS clinic (RD&E) it will be an interesting test case to see how quickly and in what way the service changes when the new NICE guidelines are published. They currently say they base their approach on the 2007 CFS/ME guidelines. They seem to be one of the few who will take on housebound patients, although it appears only for a very time limited assessment and support period. Here in neighbouring Somerset, the CFS/ME service won't accept any patient who can't attend the clinic in Wells, which is up to one and a half hours by car for many Somerset residents. They also only offer a handful of post assessment support appointments (it's actually much quicker and an easier drive to get to Exeter than Wells from my location).
 
Strain’s pre-COVID research interest focused on the microcirculation in the human body’s tiniest blood vessels, which are responsible for delivering all the necessary oxygen and nutrients to the muscles. Since the onset of the pandemic, he has continued to look closely at the microcirculation. “When we think about the blood supply, we tend to think about the bigger vessels,” he says. “They’re effectively the motorways of the body. But my focus has always been on the cul-de-sacs – the bits that get you from the motorway to your house. That’s the bit of the body I have always been interested in and we were working on this hypothesis that chronic fatigue syndrome was caused by a lack of perfusion in those vessels to the muscles and other tissues, which resulted in the muscle weakness and general tiredness and lethargy that we see.
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my memory is rubbish, but weren't F and M looking at something like this at some point - or some researchers. Sorry to be so vague! I thought nitric oxide might be involved, as a vasodilator. It also ties in with the micro capillary work being done by the Open Medicine Foundation (though this has been inconclusive to date).
 
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