British Medical Association: "Known unknowns, and as yet medically unexplained diseases" by Dr David Strain

I know that but the name was only applied retrospectively. In the Alaska outbreak the name was applied in the original paper, and it was only about the second or third case to do so.

 

Parkinson’s disease has very clear neurological signs and symptoms, the pathology has been researched and clearly shows the death of dopamine secreting cells in the basal ganglia and is improved by giving dopamine based medication.

Many neurological and psychiatric disorders eg. Schizophrenia also have no blood tests to confirm diagnosis so are diagnosed on established criteria based on years of research and consensus within the medical specialty.

 

Yes, agreed. And, as a you have commented extensively on the history of ME (cfs) on this forum, I know you know that!

I did wonder about a UK doctor giving such significance to a US epidemic. I would go with Melvin Ramsay's writings myself, and maybe go further back than that to other authors to add more background. But, definitely choose Dr. Ramsay, and his early writing on ME.

The history of ME is at one time fascinating and horrifying.

 

That looks like a weak study with a major ascertainment problem risk. The threshold for diagnosing atopy is likely to be pretty vague and diagnosis rates far from complete for all cases in population records.

 

The existence of MCAS seems pretty dubious to me and any relation to symptoms like Long Covid even more dubious. That looks like gossip science to me.

Mast cells are everywhere so being in brain or near this cel or that tells us nothing. They are near all cells.

I am afraid that most of this sort of literature is just random speculation based on pretty naive ideas about immunology.

 

The article makes a number of useful points but as others have said I am not sure that having no diagnostic test has much to do with the problem of adequate care for ME, or much to do with it being unexplained either. Parkinson's has no diagnostic test but is explained by loss of dopaminergic neurone. Schizophrenia has no test and is unexplained. And explanation is as long as a piece of string anyway.

 

It goes back to earlier 'certainties': Allergy and the chronic fatigue syndrome Scihub link: https://sci-hub.se/10.1016/0091-6749(88)90933-5

The allergy link has certainly been reported by patients and I think it was taken as a given for a long time within patient orgs, groups and fora that allergy is indeed part of ME/CFS, but as with so much else I don't think it has ever been properly assessed epidemiologically.

My own experience is that allergy onset was closely linked to onset of permanent ME/CFS symptoms and so for me the two go together - but onset may be coincidental and comorbidity results in a ratchet effect where allergy adds to general ME/CFS crappiness. As allergy is now so widespread in developed countries we should expect high numbers of ME/CFS patients to report allergy and to report that allergy worsens their ME/CFS symptomolgy, without that implying a common pathophysiology.

 

Quite some time ago, it seemed common knowledge in ME circles that if being atopic preceeded ME, then one's allergic condition would be more likely to worsen with ME. Mine did.

As well, information at that time said atopy was seen to develop with the accompaniment of ME.

I'm not saying these ideas are correct. Just what was said at the time. And, still seems to be the understanding, although conclusive evidence appears lacking.

 

Another odd thing is that now there is so much talk of MCAS - which is supposedly NOT allergy but mast cell activation for other reasons.

 

On the issue of atopy, it hasn't been formally researched a lot, but this must be explained. This was from a survey where Gez asked long haulers about some basic history and got this result:



Of course a previous course of PVFS is a larger risk factor, but would need a more representative sample to be more accurate. What's sad is that medical records can't even be used retrospectively here, since a tiny % of PVFS is ever recorded properly. Way to go, medicine! Making the present worse wasn't enough, had to make the future worse, too.

Link to post with more details: https://www.s4me.info/threads/news-...e-cfs-2020-to-2021.14074/page-121#post-299766.

 

If it was an online survey it is easily explained by ascertainment bias, which is likely to be major for questions of this sort.

There is also the issue that he is presumably asking about people who have continued to be unwell following Covid for a period of months. My experience of both my wife and I being ill for about five weeks makes me think that, like EBV, Covid may just be an infection with a long tail to it for a lot of people. That doesn't necessarily have much to do with ME/CFS in the sense of an illness that hangs on much longer with no signs of gradual disappearance.

It does sound as if there are people who have typical ME after Covid - in the sense of continuing to be disabled without much sign of change for over a year, but they may be a small group compared to a 'PVFS' group that resolve in the way it did for EBV and Q fever in Dubbo.

 

To take the UK as an example, with the total number of confirmed cases of COVID over two years amounting to one third of the population, it becomes very difficult to separate new cases of ME/CFS following COVID from new ME/CFS cases comorbid with COVID.

We don't have incidence figures of ME/CFS for the UK but 10K+ seems reasonable - that's 20,000+ who statistically would meet a new diagnosis of ME/CFS during the COVID pandemic without any need for COVID to play a role. With something in the region of a third of those 20,000 having a confirmed COVID infection and another third likely to have had an unconfirmed/asymptomatic infection there would be 13,300 newish ME/CFS patients with a COVID association, 6,700 of whom might place ME/CFS onset post COVID exposure. To see any true COVID > ME/CFS numbers we'll need to have evidence for excess over normal.

 

This is the reason I do not think that longcovid is the same as ME, though you call it CFS I suppose. It can take up to 2 years to recover from different types of infections especially EBV and flu then you have recovery from any damage caused by covid. I was not right for about 5 months after a corona virus before covid and know other people who were ill for a prolonged period after flu and giardiasis.

It is hopeful that many, if not most of those with longcovid will recover in that time scale. The ones left are the most likely to have ME but if we are not careful there will be inflated figures for recovery in ME.

It is possible that ME is caused by viral damage to a certain system, like developing deafness and if so, a diagnostic test may be able to pick it up much earlier after an infection.

 

I've heard a lot about this "science follows the evidence" thing. I'd love to see it in action one day, it's very slow going. Because it may be mere correlation, but there's no shortage of evidence to follow, if only bureaucratic paralysis could just stop getting in the way, and possibly stopped wasting resources on pet projects.

https://twitter.com/user/status/1525888713733152770

 

Sorry, this was typos and missed bits so it sounds scornful of people who feel ME and CFS are the same. We have had that discussion often and this was not meant to be part of it. Been crashed but not enough of an excuse if I upset or offended anyone.

I was trying to say that biopsychosocial types who reduce ME and CFS to simple fatigue that lasts for 6 months and call it CFS/ME may think they are the same but that would be for all the wrong reasons. If some cases are identical to ME/CFS it will because of a shared biology.

 

The 1984 stuff probably relates to this research
"Persisting Illness and Fatigue in Adults with Evidence of Epstein-Barr Virus Infection"
https://www.acpjournals.org/doi/abs/10.7326/0003-4819-102-1-7

"Chronic mononucleosis syndrome"
https://europepmc.org/article/med/6093268

"Chronic Epstein-Barr Virus Disease: A Workshop Held by the National Institute of Allergy and Infectious Diseases."
https://www.acpjournals.org/doi/abs/10.7326/0003-4819-103-6-951

The name seemed to morph from Chronic EBV/mononucleosis syndrome/disease was combined with post-viral fatigue syndromes into Chronic EBV fatigue syndrome and then the EBV bit was dropped when it was found that some people did not have their symptoms triggered by acute EBV infection.

This soup of names certainly reminds me of the soup of names associated LongCOVID!

 

That is an interesting idea, but hadn't Straus virtually disowned all this ,and the associated names. The cases involved were no doubt of a similar nature to ME. But there seems no reason to select this as any meaningful starting point.

 

Agree it would be good to be clear.

I do (and know others too), but it wasn't discovered in the 'CFS diagnosis' process - so chance is the tests just aren't being done and the disease correlations aren't being checked for (I imagine asthma is the only one that is a 'flag' so the others can be lost in the descriptive notes and never but on the 'history' as mine only ever has included certain things). Or it could be one of those awkward types, stages, or seen as irrelevant up until now because is explained by having one of the above etc.