News about Long Covid including its relationship to ME/CFS 2020 to 2021

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NelliePledge said:
From Twitter she seems to be invested in the link up her group has made with UK Sepsis Trust which obviously must be an acceptable connection.......
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Sepsis is typically (or strictly?) bacterial so... which bacteria? How? Not invalidating it but it's a bit ironic to simply turn from "well, where's the virus, then?" to "well, where's the bacteria, then?". Most likely it's because the symptoms are also very alike but sepsis is taken seriously so that's obviously preferable.

And by the way this is all so completely invalidates all the tropes about ME being a fashionable disease, a label that patients seek to enable us to fill the sick role. The rejection has been strong and entirely on the basis that it is completely discriminated and thus totally undesirable. Someone ought to explore that, how the BPS fanatics have for decades claimed that people choose and want the ME label, despite the fact that it is completely discriminated and so makes no sense whatsoever.

Because this fits the exact pattern that Wessely abused to push his nonsense about a belief in having a diseased called ME. Nobody wants to have a damn discriminated disease where you are treated like a subhuman. How that ever got accepted despite it being fully known that it is completely discriminated is a serious indictment of massive systemic flaws in health care, how absurd self-contradictory claims got to be taken seriously.
 
@Andy I feel post-COVID is in a unique category of it's own, just like Poliomyelitis. Polio is caused by one of three types of poliovirus (which are members of the Enterovirus genus). Some ME pts developed ME from enterovirus, but were never diagnosed with Polio because there are distinctive differences. That's just one example.

It's still too early, only time will tell.
 
Mij said:
I feel post-COVID is in a unique category of it's own....It's still too early, only time will tell.
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Strongly disagree with this statement. There is no scientific evidence that post-covid ME/CFS is any different from "regular" ME/CFS. If you meet the diagnostic criteria for ME/CFS (and length of time requirements), then you have ME/CFS. The diagnostic criteria for ME/CFS are agnostic with respect to the trigger.

It is NOT good to subdivide ME/CFS into subcategories without adequate scientific evidence. The reason it is not a good idea to subdivide without evidence is because it dilutes the research and fund-raising efforts into smaller pots and these efforts will become less effective as a result of dilution.
 
Jaybee00 said:
Strongly disagree with this statement. There is no scientific evidence that post-covid ME/CFS is any different from "regular" ME/CFS.
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Very few will meet the ME/CFS criteria of 6 months symptoms required in most definitions yet, since the illness hasn't been around so long for most. And many still have Covid specific symptoms and some have covid specific organ damage, blood clots etc, and many don't have PEM.

So for most post covid patients it seems reasonable to wait and see what develops over the next few months rather than rushing to an assumption of ME. After covid specific damage is elimated from an individual's diagnosis by tests, then if they fit the ME/CFS criteria including PEM, I agree, they would have ME/CFS.
 
@Trish

I agree that people with lung or other direct organ damage shouldn't be defined as having ME/CFS--but generally problems from lung damage, like difficulty breathing, aren't MECFS symptoms. If people have organ damage plus ME/CFS symptoms then maybe don't diagnose them so quickly.

The danger of waiting too long to diagnose people with MECFS from Covid, is that a narrative will develop where people will declare that they don't have MECFS, but rather that they have "Chronic Post-Covid". If you ever go onto MECFS twitter there are a multitude of people saying I don't have ME/CFS, but I have a very very similar disease called XYZ as described by Professor ZigZag in 1907. When people say this, your follow-up should be great, how are your fund raising and research efforts in treating and curing XYZ going? In my opinion, people with post-covid MECFS and MECFS from other triggers need to be united to leverage greater fund-raising and research efforts--otherwise we will all be worse off.
 
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Jaybee00 said:
There is no scientific evidence that post-covid ME/CFS is any different from "regular" ME/CFS.
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There is no such thing as "Post-Covid ME/CFS", and zero evidence that they are the same. Who made that term up?

The ME specialist I saw in 1992 diagnosed me with PVFS, and didn't feel I had ME with his 20+ yrs experience. It wasn't until I developed PEM that I fit the criteria and I was feeling 90% improved by that time.
 
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I think one can have a working diagnosis of ME/CFS and stilll look for more testing and the like. I remember this came up in a general discussion forum in my country with undiagnosed in the title. The first poster tried lots of different therapies for things like mercury poisoning before years later, after spending all his savings (and I think some of his parents also), finally accepting ME/CFS as a diagnosis. There were lots of other people in the thread who sounded like they had ME/CFS but saw such a diagnosis as giving up. My point was and would be you can have a working diagnosis of ME/CFS but still explore different angles.

And I didn’t get the impression many if any of the undiagnosed-but-sounded-like-ME/CFS people were doing anything for the cause. At least with COVID, there may be the possibility they could get some research so it may not work out as bad for us if they insist they are separate, but maybe only for the next while.
 
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I have no idea as to whether long covid will equate, in some cases, to ME.

It seems likely, as the time rolls on another few months, that some will meet the diagnostic criteria, and therefore, in the absence of another explanation, be deemed to have ME, or at least ME as any of of us have.

To me it doesn't matter.

What matters is that for a lot of people the way it behaves is strikingly similar, and that is researched, rather than used to dismiss the patients who suffer from this type off illness.

Whether or not it is ME is irrelevant to me, what matters is that it is the first publicly acknowledged and generally known 'thing' that behaves the same way.

Maybe they will find out something about it, hopefully, but even if they don't for a while it may make our position 'easier'. Even if nothing much medically is found, it's mere existence will hopefully help people to accept we do have a serious condition.
 
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Just a reminder that NHS criteria require only 4 months of symptoms for an adult, easily enough time now for those in the UK who caught Covid-19 early and who match the criteria to potentially be diagnosed with ME by their GP.

Those with proven lung damage or circulation issues would, I assume, not match the criteria, as their issues would then be 'explained' in this way.

I'm not calling for square pegs to be forced into round holes, but when a round peg is found the arguments against them joining the rest of us round pegs make no sense to me, unless you start sorting us all into onset types.
 
Andy said:
Those with proven lung damage or circulation issues would, I assume, not match the criteria, as their issues would then be 'explained' in this way.
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I suspect we may even end up with some poor souls who meet both the ME criteria and those for lung damage or the after-effects of circulation problems. A knowledgeable doctor (I'm led to believe there are a few!) should really be able to distinguish between them, once they're established and the patient has begun to understand the patterns of symptoms.
 
It's been a while since Ron Davies said they would be 'trying out' the nanoneedle test (the electrical conductivity one) on patients with other illnesses (eg MS), and then also CCI patients. Now the OMF are also involved in a research program on Covid-19.
Just wondering if they are any further in validating the nanoneedle test and if they plan to also test long-covid patients.

@Ben H
 
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