A Case Study of Successful Application of the Principles of ME/CFS Care to an Individual with Long COVID, 2023, Petracek, Rowe et al

Abstract:
Persistent fatigue is one of the most common symptoms of post-COVID conditions, also termed long COVID. At the extreme end of the severity spectrum, some individuals with long COVID also meet the criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), raising the possibility that symptom management approaches for ME/CFS may benefit some long COVID patients. We describe the long-term outcomes of a 19-year-old male who developed profound impairment consistent with ME/CFS after a SARS-CoV-2 infection early in the pandemic.

We evaluated and treated him using our clinic’s approach to ME/CFS. This included a history and physical examination that ascertained joint hypermobility, pathological reflexes, physical therapy maneuvers to look for a range of motion restrictions in the limbs and spine, orthostatic testing, and screening laboratory studies. He was found to have profound postural tachycardia syndrome, several ranges of motion restrictions, and mast cell activation syndrome.

He was treated according to our clinic’s guidelines for managing ME/CFS, which included manual physical therapy maneuvers and both non-pharmacologic measures and medications directed at postural tachycardia syndrome and mast cell activation. He experienced significant improvement in his symptoms over 30 months. His case emphasizes how the application of the principles of treating ME/CFS has the potential to provide a direction for treating long COVID.

https://www.mdpi.com/2227-9032/11/6/865

 

So, time.

Ascribing any effect here is simply not valid. Even at 12 months it should take a huge amount of evidence to give credit to some intervention or another, otherwise this makes as much sense as giving credit to some dance ritual for having solved major flooding, years after it happened. As if there's some kind of... evaporative process happening. We need medicine to respect basic reasoning.

By far the most common factor mentioned in recovery for long haulers is time. It clearly plays a significant role, and this has major implications for what the cause and resolution are.

The most frustrating thing about this is that the fact that time is a major factor is significant, that whatever process is involved has to account for that, but it's barely researched because all medical research on chronic illness uses single points in time.

Because whatever the factors are, there are people who recover spontaneously. They went to sleep feeling horrible and woke up not feeling ill anymore. Not always full resolution, but sometimes. So this factor can work on such a time scale. Sometimes it's slow improvement over days or weeks. Taking months makes no sense here other than natural recovery.

 

Interesting discussion on this.
The article came across differently to me.
I understood the authors to be saying that appropriate diagnosis and careful, well thought out interventions (that seem to have had some degree of success with PwME), when done early on, have a reasonable chance of making a difference in level of function in those with Long COVID.

 

Agree that that point is one that needs to be noted more. There is no 'cure' currently, but we've gone through a decade where certainly in the UK many/most (?) received nothing on principle. Including for related conditions that began at the same time, trying things that might help in some and don't do terrible harm (and there might have been a clinical guide to help on who/when they tend to work), comorbidities and sometimes basic medical care - until recently (when 'MUS' has spread to other conditions) basically didn't get things those who weren't labelled would have done as standard.

So given that 3 year time period is pretty key, far from taking other solveable issues off the plate/body - no matter how small they might seem - these things were purposefully accumulating in these individuals as a load of illness in a way others didn't have that.

In the current situation that seems to be the best chance people have - decent advice that says that is the time period those around them need to get their head around taking it seriously for if there is to be a chance of any natural improvement/give people the best chance. And that informing future plans if the same people do recover but then end up taking a big dip again.

The authors themselves note some or all of the recovery might have been spontaneous over time. But from reading this none of these ideas were applied without common sense judgement e.g. they looked into the history of allergies and asthma and tried out different things for POTS to see if they helped. And it is a case study rather than a trial and isn't too bad an indicator of how one might approach doing what is worth trying without suggesting this necessarily means he either had ME/CFS or that any of these things were a cure for LC.

I can't see what good leaving someone without treatment for POTS does for ME with all the crashes and exertion of that for example. And whatever views might be on MCAS if someone had allergies and a certain combo of antihistamines helps with symptoms I don't get the issue and particularly if they've raged when their ME has gone on a downward tilt etc. And we know that not only is ME/CFS (and this is LC) probably different types but people who get it have different bodies and comorbidities and severities so until there is a miracle cure we need to get people's minds back around some sort of clinical approach.

And for methodology purposes too - because if some things on that list might have been standard and help a bit and others are 'woo' and it is all put down to that woo thing we've an issue. But I do think that if we had decent clinics that could be making sure any standard things had been tackled that is more 'evening the field' vs leaving people untreated making for it being 'homogenous' sample isn't it? ie any trial has stabilised patients with whatever standard medical care is relevant to them before you see whether 'that one trialled treatment' makes a difference?

 

"He was treated according to our clinic’s guidelines for managing ME/CFS, which included manual physical therapy maneuvers and both non-pharmacologic measures and medications directed at postural tachycardia syndrome and mast cell activation".

How does this apply specifically to M.E? This could apply to many other health conditions.

What type of manual maneuvers help pwME?

 

Yes, misrepresentation.

 

That is what they are saying but without a scrap of evidence.
We don't even have evidence for success in PwME, or well thinking out, really.

I have no idea what restriction of movement has to do with it, especially if it supposed to be related to more unrestricted movement - i.e. hypermobility.
I get the impression that this group has lost the plot.

Edit: cross posted with Hutan.
Yes, this is getting a bit topsy-turvy.

 

I think this is a median nerve stretch test. You probably put the hand into a position that already tightens the nerve - maybe wrist extension - and then extend the elbow. It would be a median nerve version of what is known as the sciatic stretch test - straight leg raise with dorsiflexion of the foot at the ankle.

These tests produce discomfort and pins and needles in most people at some point. I had physios doing them on me when I had sciatica and carpal tunnel syndrome and coming out with 'expert advice' on my neurodynamics. Except that what they said didn't fit what I actually knew was the case from the images and my symptom pattern. Physios love these tests but they are pretty dubious. There is another one called the slump test for spinal nerve stretching in general. In an acute prolapsed disc the sciatic stretch test can be dramatically clear - able to raise the good leg to 70 degrees and the bad one to twenty with a yell of pain.

I don't know who the authors on this are but I suspect at least one is a physio and this is typical of the sort of self-fulfilling work-up procedures they love to go through.