The first reviewer, Brett A. Lidbury, writes:
My only comments are to encourage clarification on the comment, “Furthermore, the symptoms of ME/CFS overlap with those of viral infection. As a result, there is not the stereotyped history of post-infective illness seen, for instance, in Reiter’s syndrome, in which new symptoms appear several days after the acquisition of infection”, under the “Relation to Intracellular Infection” sub-heading. I am not sure that I agree with this position and would quote recent Long COVID examples where 12 weeks are needed to see the appearance of idiopathic, long-term fatigue, PEM, and associated symptoms (not including the immediate post-infection period where the impacts of acute inflammation may be observed via cardiac, lung, or other organ sequelae).
Jonathan replies:
I am not sure exactly what the concern is about the evolution of symptoms. We were making the point that many features of ME/CFS, including fatigue, malaise, orthostatic intolerance, nausea and sensitivity to light and sound, are also features of acute viral infections such as EBV and Covid-19. This makes it more difficult to clearly separate the acute viral illness from the subsequent long term illness. The requirement of several weeks observation before a diagnosis of ME/CFS is made reflects this overlap. The PEM pattern of exacerbation after exertion may be hard to tease out early on when malaise and fatigue can vary, perhaps with periods of viraemia, and can also appear to follow exertion, although that is hard to pin down. Unlike Reiter's syndrome there is no very clear distinction between the initial viral and later ME/CFS symptoms themselves.
My experience was that some of my ME/CFS symptoms came on quite suddenly and were very different to the flu-like symptoms I had from the infection, or any symptoms I had had before. Specifically, I thought I had developed an allergy to something(s).
As I’ve written before, for a long time I struggled to accept my ME/CFS diagnosis. One of the things that persuaded me that the diagnosis was correct was reading an account by a physician (can’t remember who) who wrote that ME/CFS patients often present by saying that they think they have developed an allergy to something that is making them feel unwell.
I would be interested to know if this type of complaint might be a way of predicting whether people are likely to have unresolving ME/CFS rather than resolving PVFS. I’m not suggesting that everyone with ME/CFS has this type of symptom, but I wonder if having it may mean you are less likely to recover. I also wonder if the same may apply to alcohol intolerance and other distinctive symptoms.
Writing the above returns me to the discussion we had earlier in the thread which I wasn’t able to continue due to my limited capacity:
This is the fallacy of assuming that a diagnosis is a diachronic concept despite being made at time X.
I realise that this is very counterintuitive and inconvenient but those are the sorts of things I tend to turn my attention to!! If we talk of 'different illness' we have to be clear whether we are talking about cause or effect and whether it is now or how things turn out.
Diagnostic criteria are a mirage because they take none of this into account.
I think I understand what you’re saying here but there is a difference between a diagnosis and a definition of a disease for the purposes of a hypothesis.
Your hypothesis paper and your Concept of ME/CFS paper both reference the CCC and the 2021 NICE guideline. If you’re defining ME/CFS in accordance with CCC or NICE, then the statement that “Adult-onset illness mostly never fully resolves” appears to be misleading – at least to me and to others on here who probably know considerably more about the characteristics of ME/CFS and the epidemiological data that many of scientists who we hope will be reading your paper. If, on the other hand, for the purpose of your hypothesis you are defining ME/CFS as an illness that mostly never fully resolves in cases of adult onset (which would be a valid definition), then I think you need to make that clear.
You said before that you may re-word the paragraph in question, and I agree that that would be worthwhile, if you’ve not already done so.
I’m sorry to bang on about this but I think it’s important. I also apologise if I’m repeating myself or anything anyone else has said – I’ve not managed to keep up with this thread and I’m running on very limited capacity.
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