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

I've been bitter today (trying not to be) because the best interpretation of what happened is that long covid was created for all sorts of bad reasons and primarily to avoid a ME/CFS label. They had to invent a new label because ME/CFS was too toxic and couldn't be used.

In some ways this is good because it quickly led to research funding, but in other ways it could be a terrible mistake.

 

For what it's worth, I was talking to an enquirer to the Irish ME/CFS Association today with long term symptoms after Covid who suspects she has ME. Her own GP said that "postviral illnesses are all in people's heads".

 

From the comments by a healthcare provider:

Could our pre-COVID-19 CFS/ME patients just be long haulers from previous "less noticed" Corona virus infections?

 

The label was largely created on Twitter and entirely from patients, no medical professional was harmed or involved in the creation of Long Covid as an entity and the patients knew nothing of ME, or CFS, or chronic fatigue, like most of us (who apparently have "unhelpful beliefs" about things we didn't even know exist, or whatever).

It also includes issues that are unrelated to ME so I have no issues there. The problem is medical institutions enforcing the separation and continuing the discrimination. As usual, medicine is itself in the way of its own success and, ultimately, the main obstacle towards any progress. That's bad, as in uniquely bad. Modern professions are not supposed to be this bad. Even 19th century engineering wasn't this self-defeating, this is historical level of being bad.

The LC label has significant meaning. What's wrong is medicine pretending the vast majority, including POTS and brain fog, is somehow completely brand new and unheard of and obviously completely different from the chronic illness crisis that was allowed to unfold strictly out of incompetence. Professionals should be held to higher standards. The standards in medicine are clearly atrocious. But the label was created largely out of necessity stemming from medicine's failure and the obvious need to avoid blaming anyone, even though pretty much everyone deserves enormous blame.

 

I was thinking about the fact that in some countries some workers e.g. some health workers are out on full pay due to Covid. Now that the pandemic is still raging, there is not much focus on that, but such huge expenses and little incentive for some to go back to work could lead to some interesting battles ahead. Though on reflection they may stop paying out at that level.

 

Yeah, I have been wondering about that for a while. Could explain the seemingly non-viral onset cases. Presumably the old corona viruses, just like the current one, can also cause asymptomatic or very mild disease that would go unnoticed outside a pandemic. All you'd register would be that you're feeling a bit off, you'd push through, feel a bit worse, push some more, feel worse again, and hey presto "long-Covid-03" or "long-Covid-1977" or "long-Covid-[insert year your misery started]".

And there are all those flu-like viral onsets that were never tested to identify the pathogen. Corona's as good a bet as any.

 

I think that is a key issue.
I am thinking of my own experience when I had some kind of virus for several days followed by what was described by my GP as 'acute pleural rub', for which I was prescribed anti-biotics (which didn't work), then the diagnosis changed to pneumonia (although no tests were done) and a further course of much 'stronger' anti-biotics. A week or two later I had all the symptoms that are being described by LC patients (crushing chest pains, difficulty breathing etc etc) .

Eventually a chest x-ray showed my lungs were clear but the symptoms persisted for well over a year afterwards (might have been much longer); I had to be put on a nebuliser on one occasion and was prescribed an inhaler during that time.

But as I have said on other similar discussions, the 'link' between the initial viral infection, subsequent diagnosis of PVFS, then ME have all been lost as far as my medical records show; reduced to a single entry of CFS in the year it started.

 

I was meaning to post something about this in the LC and ME/CFS guideline feedback threads but wasn’t well enough.

I often wonder to what extent self-limiting PVF or PVFS from which people eventually recover overlaps with ME/CFS. Are they different degrees of the same thing? To what extent does appropriate management prevent PVF from becoming ME/CFS? Or is ME/CFS something altogether different, from which people don’t recover whatever approach they take. Or are there two or more types of ME/CFS – one which can result from wrong management of PVFS (from which long term recovery may or may not be possible) and one (or more) which is altogether different and can’t be reversed with any type of management? Or might they start off as the same thing and then some other factor or factors determine whether it becomes permanent ME?

FWIW my ME (which I didn’t accept as a diagnosis for a long time) never felt like a post-viral syndrome that was gong to get better with rest. It felt like something new – and right from day one not exerting myself or “resting” only ever felt like it was stopping me from feeling worse rather than helping my body to heal or recover.

My suspicion is that from onset many people who have a self-limiting PVFS may be more likely to accept PVFS as a diagnosis than someone who has the type of ME that doesn’t get better. I’ve known quite a few people who’ve had post-viral fatigue. They’ve mostly seemed fairly comfortable with the diagnosis and after speaking to them I’ve never been too concerned that they had what I have or that they wouldn’t get better – although I also often read accounts of people with long-term ME (whether mild or severe) and think “that doesn’t sound like what I’ve got”.

I also wonder to what extent an experienced physician (or anyone else) might be able to differentiate between those who gradually or suddenly recover and those who don’t from listening to their account of their symptoms. I seem to remember Chalder (I think) published a paper which linked “alcohol avoidance” to poor prognosis. That paper seemed to confuse cause and effect, but I’ve always thought that alcohol intolerance could be useful clue to understanding the pathology of ME and I wonder how predictive it is of poor prognosis (anyone know of any reliable research on this?) It’s such an unusual symptom in other illnesses.

Similarly, one of the things that eventually made me accept my ME diagnosis was when I read somewhere that people with ME often initially think they have developed an allergy to something or somethings. This was certainly the case with me – I went from being a student with no allergies who drank an average amount for a student who drank too much, to someone who couldn’t tolerate half a glass of wine and felt like I was having permanent allergic reactions to all sorts of things. In fact, the initial treatment my GP tried were various antihistamines, which made no difference.

I don’t like talking too much about my symptoms but there were (and still are) various other specific symptoms which I suspect may have been predictive of a poor prognosis. Of course, I may be completely wrong about all of this – it’s more of a guess than anything based on any scientific evidence – but that’s why I’m raising it, because I’d be very interested to know more.

Although I agree with the draft ME/CFS guideline that the recommendations for sensible management should be the same for anyone who has PVFS or ME/CFS however long they’ve been unwell, I wonder whether it would be useful to delay a diagnosis of ME/CFS for up to 2 years, unless or until we can differentiate between self-limiting PVFS and ME/CFS.

First, it could be harmful for people with self-limiting PVFS to think that they have an incurable illness if that is not the case. I’m not suggesting that patients should be lied to (as I was) by reassuring them that they will definitely get better. But equally they shouldn’t be unnecessarily fearful that they will never recover, as some may with a diagnosis of ME.

Second, it is unhelpful and potentially harmful to people with incurable ME to be equated with people who have or have had a self-limiting PVFS, particularly when those who recover naturally (and/or their therapists/doctors) wrongly infer that whatever treatment they were trying when they started to feel better was responsible for their recovery – although one never quite knows with people who’ve been brainwashed with BPS bullsh*t whether they’re actually feeling better or just telling everyone they do because that’s what they’ve been told they should think and say in order to recover.

Sorry, this is a bit of a ramble and I’m not feeling well enough to go back an edit it but I hope it makes sense.

[Edit – just come back to this and corrected some typos any missing words to make it make more sense]

 

https://www.youtube.com/watch?v=n-mfARylRDE

Definitely way too much is being made of the UK LC clinics without considering whether they are any good. It's assumed that they must be good. Very flawed thinking.

 

@Ravn

What finally made me accept a diagnosis of ME was 1). a relapse after feeling almost fully recovered for 9 months 2). delayed PEM which is not normal.

 

The infuriating thing is that nobody knows. It's scandalous that nobody knows, that there hasn't been anywhere near enough research to be able to make even just an educated guess. It's not as if post-viral syndromes are rare, there's been plenty of opportunity to study them. Yet almost nobody, apart from those directly affected, has taken them seriously. But maybe, just maybe, long-Covid is changing that and is finally going to get us nearer some answers.

 

When people learn that my ME was triggered by EBV, they'll often tell me about their experiences with EBV. Many did not recover within the standard two week recovery time that is in medical textbooks. A staggering amount were ill for months (if not years) afterwards and they received no help or recognition whatsoever from the medical community. A friend's father (who was extremely successful in his career) told me that he has "never felt the same again" after getting EBV in his 20s.

Rather than studying post-viral illnesses, questioning the textbooks or at least providing some recognition that it happens, medical professionals denigrate, mock and dismiss those whose experience doesn't fit the textbook.

 

The Swedish Journal for the Medical Association had a couple of articles on long covid and rehabilitation yesterday.
One article is about a support group of doctors with Covid-19 wanting national guidelines and multidisciplinary clinics.

A GP specialist says she's been trying to get back to work many times, but not been able to. She has received no help.
Another GP wants to be anonymous. Just by being interviewed, she might suffer from an overwhelming fatigue for a day or several days afterwards.

- Many general practitioners have pushed the thesis that this is a disease that is similar to electrical allergy. When I arrived at the health center, I was treated as if it were a mental illness, even though I could not walk more than 300 meters, had high kidney values and suspected blood clots and was admitted for suspected encephalitis, says the doctor from Skåne whose first primary care doctor thought that she had health anxiety.

Läkartidningen: Stödgrupp vill se nationella riktlinjer
google translate: Support group wants to see national guidelines

 

What If You Never Get Better From Covid-19?
Some patients could be living with the aftereffects for years to come. Recent research into another persistent, mysterious disease might help us understand how to treat them.

https://www.nytimes.com/2021/01/21/magazine/covid-aftereffects.html

 

That NYTimes article seems generally good, but I am getting distinctly ratty about the history of ME as it is presented to journalists. The US role in the psychiatrisation of the condition seems always to be whitewashed. What about Imboden, Canter and Cluff , and Eisenberg, and Strauss, and the CDC and NIAID? I'll stop before I become apoplectic.

 

I have mentioned before that my husband had PVS after flu in the days before we knew anything about ME and never had any suspicion we could have the same illness. It was completely different in character to anything I had experienced.

Basically he was constantly exhausted, pale, and ill looking with no neurological problems though his thinking was muddy because of fatigue. Despite having to struggle to work he just started to pick up after about 9 months.

He had none of the variability of symptoms that was a cardinal sign of ME where he felt fine one day then collapsed the next. PEM is probably the most prominent of these variable things but most of my symptoms fluctuate.

My own belief is that a carful history from a competent, informed doctor could differentiate the 2 fairly soon after onset. Once we have a test I am sure that will be true.

PVS is a different disease from ME though it is possible for PVS to mask the symptoms of ME for the first few months if you have both. Like being exhausted after a viral illness but feeling better except you are left with asthma or coeliac disease.

 

I saw this posted elsewhere but haven’t watched myself except for a couple of minutes.

Prof Danny Altmann of Imperial College London

YouTube / Long Covid
Date: January 16, 2021
WebTV:

https://www.youtube.com/watch?v=rRWLOmNtj7I

Item: PCS relapse after vaccination?

 

Moved from this thread:
George Monbiot: UK journalist, writing about ME/CFS and long covid - Guardian article 21/1/21

NYTimes Magazine article is up:

https://www.nytimes.com/2021/01/21/magazine/covid-aftereffects.html