Going through that letter with its arguments for not giving people an ME/CFS diagnosis if their illness started after Covid-19:
The triggers for ME/CFS are more variable than Long Covid and there is a case for maintaining a separation between the two, rather than giving people with a clear diagnosis of Long Covid a second diagnosis of ME/CFS.
Certainly, different diseases and other causes may trigger ME/CFS. But, that is also true of the umbrella diagnosis of Long Covid - medical harm from the treatment (drugs, ventilation); mental harm from the disease and/or treatment (PTSD), harm from the disease. It is likely that a large percentage of people who develop ME/CFS due to a cause other than Covid-19 from 2020 onwards will be diagnosed as having Long Covid.
The second part of the sentence is poor logic. Many causes may result in the same medical problem. People can end up with a broken leg from a fall from a rook and from car accidents. It is reasonable to keep track of the number of falls and the number of car accidents, but it is also reasonable and completely possible to categorise the injury as 'broken leg'.
Many of our patients with ME/CFS have a clear post-infective onset, but there is a significant proportion who have identified other triggers for their ME/CFS. There is some evidence from post-infective studies such as the Dubbo study and glandular fever research suggesting people who are more ill to start with are more likely to be more ill for longer, but this isn't quite the same pattern post-Covid.
I have written elsewhere in the forum on how that Dubbo finding of more severe illness causing more post-infection fatigue syndrome is questionable. The delay in the evaluation of the people in the study after acute illness onset probably meant that people with lingering symptoms were more likely to be categorised as having a more severe illness. On the other hand, there are a lot of studies that reported that more serious Covid-19 illness results in more Long Covid. Of course, a lot of those Long Covid cases won't be ME/CFS, but the data is messy.
There are more complex consequences associated with Covid infections which need particular attention, such as the respiratory consequences.
Long Covid is an umbrella diagnosis. All the more reason to separate out the different consequences that need different treatment. If someone has lung damage, then presumably they can be diagnosed with lung damage triggered by Covid-19. If someone has PEM and meets the other ME/CFS criteria, then they can be diagnosed with ME/CFS triggered by Covid-19. On the other hand, people who develop ME/CFS after other illnesses may also have more obvious damage. Someone who has had Ebola may have hearing loss as a result of their infection, as well as ME/CFS. People with Q fever might develop endocarditis as well as ME/CFS.
Diagnosing ME/CFS means that the patients will be covered by the NICE guidelines for ME/CFS, but we have a separate NICE guideline for Long Covid which will be a more appropriate guideline to work with as it is more focussed on the different aspects of Long Covid.
Ugh. Here in plain sight is the rationale. 'If we diagnose people with ME/CFS, we are not free to impose whatever unevidenced nonsense takes our fancy'. It puts people with PEM in harms way.
Within the Bristol M.E. Service, having a separate pathway for patients with Long Covid and ME/CFS allows us to set up groups for Long Covid patients who all have the same onset and are relatively recently diagnosed, rather than mixing Long Covid patients with ME/CFS patients, many of whom will have been ill for over five years.
What about the people diagnosed with ME/CFS in the last 5 years, as a result of a glandular fever infection, for example? Would they not benefit from being in a group with other recently diagnosed people who meet ME/CFS criteria following Covid-19? Or, are the therapists not coming across anyone being diagnosed with ME/CFS any more? As in, ME/CFS has been successfully disappeared... And, I wonder, how many people who have had ME/CFS for more than 5 years are they actually treating? Many of those people will have given up on ME/CFS clinics and therapists.
There may be an important difference regarding prognosis. The prognosis for ME/CFS and Long Covid may be different, and we are seeing patients with post-Covid-19 syndrome making steady progress: the timeline for progress may be different from the timeline for ME/CFS.
There is no evidence that the prognosis for ME/CFS-like Long Covid and ME/CFS is different. There is evidence suggesting that most people ill with ME/CFS symptoms at 3 months recover, regardless of the triggering infection.
There is a concern that re-diagnosing someone who already has a Long Covid diagnosis with the additional diagnosis of ME/CFS could be detrimental to morale. Some might interpret this as meaning that they now have two conditions. There is a clear problem with using two diagnostic labels for one condition, and this is particularly important when we consider how data is collected in Primary Care. If patients get two diagnoses, then prevalence data will become much more difficult to interpret, which could have a negative impact on service provision.
This letter makes me more and more angry. Giving someone a diagnosis of ME/CFS in addition to Long Covid is only detrimental to morale if the diagnosis results in them being stigmatised. And, who is responsible for stigmatising ME/CFS? It is certainly detrimental to morale to think that sleep hygiene and breathing properly and exercising is going to make you well, and to push through symptoms in order to meet the goals you have "negotiated" with the therapist, only to not only fail to meet those goals, but also to significantly deteriorate.
As a forum member pointed out, the clinic seems to have no problem diagnosing people with both POTS and Long Covid. In that case, the earth seems to keep turning and the NHS continues to exist. As I mentioned before, patients can be diagnosed with both a car accident and a broken leg. It seems obvious that not diagnosing ME/CFS when it is appropriate to do so will significantly mess with prevalence data. Perhaps a drastic decrease in ME/CFS prevalence accompanied by a massive increase in functional disorders will have an influence on service provision. Perhaps that is indeed the aim?
Research into Long Covid should be selective, and this argues for maintaining a separate diagnosis, especially for any research which relies on accurate coding of the diagnosis. Perhaps more importantly, any treatments developed for post-Covid syndrome may or may not be generalisable to ME/CFS and it is likely that further research will be required to evaluate Long Covid treatments in an ME/CFS population.
That argument that "research into Long Covid should be selective" is particularly ridiculous. Having a person just with "Long Covid" is not at all specific - the person could have gross tissue damage arising from Covid treatment or the disease itself, or they may have ME/CFS. If you are serious about doing good research, it is vitally important that people with the umbrella diagnosis of "Long Covid" are stratified into more useful groups. Dual diagnoses helps with that. I think it's actually likely that there will be a significant proportion of people given the Long Covid diagnosis who will have developed their symptoms after infections of pathogens other than SARS-CoV-2, for example after an EBV infection. I think it is going to be incredibly difficult for researchers to ensure that their cohort is "pure" Long Covid.
