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

A problem with diagnostic guidelines is that it is virtually impossible for them to take into account all contextual factors in a way that reflects reasonable judgment very often. As an example, if I was asked about eighteen year old man who after a couple of days of febrile illness from 'one of those usual winter viruses going around' seemed better initially but then became bed bound for three months I would say that it would be important to consider ME as whammy end up the diagnosis and the patient and carers should be given lots of information about it. On the other hand, if I was asked about the same young man who had this time been in bed for three weeks with severe anginose EBV with splenomegaly and delirium followed by very gradual recuperation over four months, managing to get about but still finding exertion produced a nasty reaction I would tend to assume that long term ME was pretty unlikely. I would still advise not to push things but would not see education about ME as priority.

It is worth noting that the UK NICE guidelines does not tell doctors when tomato diagnosis of ME but when to consider the diagnosis. Very often what drives management is considering a diagnosis, not making one.
 
dave30th said:
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?
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I don't know the literature on that.I don't think Dubbo reported PEM as such. It may have been before PEM was named.
But I certainly remember what people seem to call PEM during my post-EBV illness. I remember complaining that if I tried to do any sporting activity I felt ill afterwards, in addition to having to give up almost as soon as I started. It was 50years ago but It is one of those conversations that stays with one lifelong.
 
Kitty said:
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.
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I see this as more of a cultural problem. People should be allowed to convalesce. Medics should use common sense and not play into the gladiator view of human existence. I read a headline in the news the other day that Goldman Sachs is pushing to limit working hours to 80 hours a week. So to me this is a sign how far out of hand things have got. Even the gladiators are rebelling against their own ideal.
 
Jonathan Edwards said:
But I certainly remember what people seem to call PEM during my post-EBV illness. I remember complaining that if I tried to do any sporting activity I felt ill afterwards, in addition to having to give up almost as soon as I started. It was 50years ago but It is one of those conversations that stays with one lifelong.
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This sort of collapse after exertion is very distressing and disabling and seems to be what people with longcovid and a lot of other illnesses take to mean PEM and that may be a good name for it but it is not what I experience after exertion. Or, at least I get that now, though not so much in the early days, but it is not the sort of energy problems that distinguish ME.

I believe one of the reasons ME/CFS is not taken so seriously is that many people with ME do not have such a bad level of collapse after exertion as someone with EBV, say, so they seem to have a mild post viral because what does happen to them is not understood.

It may be elucidated in time to come but a way to describe it is that people who have an infection need to convalesce and build up their strength because they have a fully functioning energy metabolism that is under strain while people with ME have an aerobic system which is broken. As long as the demand for energy does not exceed a certain point they function apparently well by slipping into the emergency anaerobic mode but that is not meant to be used for daily living and runs out - like living off savings.

When the person with a post viral syndrome recovers they are back to normal except for tissues damaged by the infection. The tissues damaged in ME are the energy production ones.

I say it is different in ME because I never see a description of PEM that matches what I get except among people with ME.

I did some chopping of vegetables in Monday so on Thursday I did not feel so good (though I was as usual Tuesday and Wednesday) I went back to bed but I developed a sore throat that hurt when I swallowed and the glands in my neck and underarms were swollen and painful. It felt as if I was getting an infection so I worried about covid.

Usually infections get worse at bedtime but as time wore on it stayed the same. By next day it had gone. ME not covid. That is PEM in ME though it is not a good description and I wish we had one.

That is only one of the ways ME differs from the other post viral experiences. if we only had clinics where the doctors fully understood the disease it would be possible to pick out ME from other post viral syndromes as a very early stage. It is the language that is confounding not the disease.
 
Mithriel said:
It may be elucidated in time to come but a way to describe it is that people who have an infection need to convalesce and build up their strength because they have a fully functioning energy metabolism that is under strain while people with ME have an aerobic system which is broken. As long as the demand for energy does not exceed a certain point they function apparently well by slipping into the emergency anaerobic mode but that is not meant to be used for daily living and runs out - like living off savings.
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I am not aware that we have any scientific basis to support that. It does not seem consistent with PEM after mental exertion either. From what I hear on the forum people with a diagnosis of ME have all sorts of patterns of 'PEM' symptoms. I don't really see how any one person can claim that ME PEM is different or that people do not have the same problem after EBV or Covid19.
 
Jonathan Edwards said:
I am not aware that we have any scientific basis to support that. It does not seem consistent with PEM after mental exertion either. From what I hear on the forum people with a diagnosis of ME have all sorts of patterns of 'PEM' symptoms. I don't really see how any one person can claim that ME PEM is different or that people do not have the same problem after EBV or Covid19.
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The findings from the Workwell experiments strongly suggest that the aerobic energy system does not work as well as it should in people they have tested. The important thing is that they make predictions from this and they work. If you act as if you have a damaged aerobic system so you slip into anaerobic respiration just to do the functions of everyday living it makes a big difference to the experience of ME. This suggests that it is in the right direction even if it is not completely correct.

I make the claim because of the way the consequences of exertion in ME in the days before CFS was invented were described. They matched my experience well.

The years since have been full of trying to twist the symptoms you get with ME into the boxes you are offered. I never complained about fatigue in 17 years of ME and if it was mentioned it was low in priority but after it was renamed CFS I realised that new patients were talking about the same thing as I got but now calling it fatigue.

I have known people with EBV and prolonged post viral symptoms but they don't have the same thing I ever had. Also common parlance does not match my experience or the people I knew before CFS. It is not usual to be perfectly fine after going shopping at the weekend then collapsing half way through the week and I have never heard anyone without ME saying "I planted some flowers yesterday and I can't wear a bra today because have painful lumps like golf balls in my armpits"

It is what has happened over the years due to the interference of the BPS "lumpers". The unique characteristics of ME have been diluted or forced to fit into generalised categories so the onus is on the patients to prove something that the medical profession should be investigating.

I feel the same thing may be happening to longcovid and it definitely happens in depression and anxiety where we are told we have that but it is so different from the awful experiences of those with true depression and those crippled with social anxiety.

I must stress that I am not saying anything about others experience of ME, maybe what I have and a category of others is not really ME/CFS as it is known now and people with long term EBV and post virals can be much sicker than anyone with ME. Being sick and unable to live life properly is terrible no matter what you have or what your diagnosis happens to be.
 
Copied from the long covid thread to keep discussion in one place



Apparently Sharpe re-tweeted it so it's probably going to be bad. But we'll see.

Definitely not a good look at the comment above showing ignorance that ME is commonly relapsing-remitting, meaning no knowledge of PEM. Then again is there any research at all that studied this? Feels like something massive that has been overlooked, it's common knowledge for those familiar with the disease and yet there is basically no evidence to point to.
 
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