The disappearance of ME/CFS

Yes. Everything is slightly non sequitur. The prognosis for LC in the first year or so may be different from ME/CFS as a whole but is may well similar to ME/CFS in the first year or so.. and so on.

The desire to avoid ME/CFS guidelines seems to be at the centre of this. It is something that I think is central to the problem of devising watertight policy for very severe ME/CFS cases.

What I hope may be a guiding principle is that any treatment (or even diagnostic decision) that is not supported by reliable evidence and is against the patient's wishes should be considered unethical and potentially illegal.

 

It shows a complete misunderstanding of the diagnostic process. There is every reason to separate 'pneumococcal infection' from 'pneumonia' despite in many cases them applying to the same person. ME/CFS and Long Covid are different stratifying types of diagnostic category, just like 'car accident' and 'broken rib'.

And why is an occupational therapist writing this letter? It is not their job to diagnose - as is evident they are not trained to understand the process.

 

Sorry I don’t know if this is off topic for this thread but we have the opposite problem going on in Switzerland. ME/CFS is not a recognised condition here and there are virtually no experts or anyone with experience except psychologists.

What the Long Covid clinics do is whenever they see someone severly affected by long covid, they give them an ME/CFS diagnosis, refuse to diagnose long covid, and tell the patient that they will need to find help elsewhere.

I can see three reasons for this:
1. The long covid clinics are overwhelmed and will do anything to discharge patients.
2. The doctors believe/are feeding the belief that long covid is something temporary that doesn’t affect people severly and are removing anyone who poses opposite evidence to this.
3. In switzetland you cannot get Disability insurance for ME/CFS but you can for long covid, this covert policy, whether on purpose or not is saving the government tens of millions a year.

 

The arguments that giving someone a diagnosis of ME/CFS in addition to Long Covid is detrimental to the patient and research into Long Covid should be selective, and this argues for maintaining a separate diagnosis, have also been made by David Putrino.

 

@Jonathan Edwards, this OT was my main contact at the service. It was she who initially diagnosed me with "PVFS following Suspected Covid-19" and later updated the diagnosis to 'Post Covid Syndrome' (although the latter was already on my GP record by then, so it was more of a formality). Indeed, my GP - who had obviously referred me to the service - was quite sniffy about the initial diagnosis being made by an OT (I had issues with that GP continually trying to deny that I'd had Covid or that it was the cause of my new issues).

However, I'm 100% sure that Peter Gladwell was behind that letter - to the point that I suspect he wrote the whole thing and Sarah just signed her name to it. She got so flustered when I tried to discuss the issue with her that the letter resulted from her need to go away and discuss it with the Clinic Lead (Peter). During the phone call, she started complaining that they had so much to do with all the changes to the service and actually said something like "I just can't deal with this right now". It was most unprofessional.

Now, should a physiotherapist - even one with a doctorate - be diagnosing a complex neuroimmune disease instead? If it was Todd Davenport - who's qualified to a similar level on paper - I'd say "yes" but, as a general rule, maybe not.

In fact, given the NICE guidelines now require specialist medical staff at these clinics (without looking up the exact wording), I wonder how long he'll be allowed to stay in charge of this clinic.

 

The thing is, physios at least can diagnose some MSK conditions (or at least that seems to be largely accepted in the NHS), so I think it becomes a bit of a grey area.

I have the same issue with 'pain clinics'. I've had GPs say (e.g. when I had a suspected slipped disc & 'sciatica' over Christmas) that, if different medication or investigations were needed, they'd be able to do that at the Pain Clinic but, as far as I'm aware, these clinics are physiotherapy-led (possibly with input from psychotherapists/'talking therapy'). The one at NBT (same department as the ME Service) explicitly doesn't accept referrals for patients whose pain is explained by a diagnosed condition (i.e. they only treat 'chronic primary pain'). However, I think they do provide some joint injections, so I'm not sure how that works. I've noticed that my GPs have a lot of misconceptions about all of these services.

 

@Tal_lula wrote:

"I've noticed that my GPs have a lot of misconceptions about all of these services."

Worrying, but probably common. Pain clinics/Fatigue clinics etc are ways for GPs to pass on the patient problem and think they have actually done something. GPs can end up just passing the buck.

 

Throughout the 1980's, in all facets of medicine, there was an acknowledged Lyme persistence called chronic Lyme. By the early 90's, a mammoth and sustained PR blitz to disappear chronic Lyme as a politically correct concept - that continues to this day - had been launched. By most accounts, it's been successful.

So, there's precedent.

 

Is there anything we can learn from that?

I looked into it a bit and chronic-lyme disease seems to be dismissed while post-treatment lyme disease is documented and acknowledged, what gives?

 

Science doesn't necessarily win. It might not even place.

Lots of books out there that try to demonstrate what happened, and why, but there's simply too many why's.

ETA: This is an epic fail in diagnostics, which is different than what drags at ME/CFS, at least in theory. Geez, even that is convoluted and contested. Certainly diagnostics fail pwME as well.

 

I can see there may be an argument for this too, but I don't understand resistance to a single diagnosis of Covid-associated ME/CFS (or similar).

Researchers who don't want post-Covid cases can still exclude them, those who only want post-Covid cases can include them, they would be tagged as post-Covid in national statistics, and using ME/CFS steers the individual toward management information and peer support that's likely to be the most relevant to them.

 

What if someone has both? As in has two discrete diseases simultaneously: ME/CFS and LC?

 

You'd keep both, I guess. But for someone who has ME/CFS symptoms that can be linked to Covid, I don't see why a qualified ME/CFS diagnosis couldn't be given. They need the same care, the qualification is only for research and statistical reasons.

 

There aren't two discrete diseases with those names, at least as used now.

ME/CFS is a clinical syndrome term.
Long Covid is a term that implies causal ascription or at least association.
Both can apply without any sense of duplication, just like pneumococcal infection and pneumonia or car crash and broken leg.

They are not 'diseases'. Nobody should be suggesting they are.
They are clinical categories. I think Kitty has this exactly right in post 16.
David Putrino was making a point about research categorisation - which does not necessarily have anything to do with clinical categorisation. whether he is fully aware of that or not I wouldn't know.

 

Semantics, most of which are rooted in willful inertia.

You could use the same logic for PTLDS. And you'd have good argument for three distinct entities that look almost identical. LC is not ME/CFS is not PTLDS/chronic Lyme.

Patients who have been around the block could write reams about the differences.

And ultimately it may matter in significant ways, e.g., should persistence factor in LC and PTLDS, and ME/CFS prove to be immune dysfunction.