Also though, rapidly lumping ME/CFS with LC at a time when a lot of those with post-viral symptoms are going to recover is going to mean that many of these people will think of ME/CFS through their own personal recovery narratives. Amongst medical professionals who suffered from forms of LC, I expect that those whose views go on to have the most influence amongst their colleagues will be those who recover. When the biopsychosocial model has long been promoted to medical professionals to explain how patients can recover, I expect that this framework would often come to be used to help understand their own experiences (and it may help do so). Politically, I see more potential downsides to rapidly lumping LC with ME/CFS than I do upsides.
I remember having post-viral fatigue after EBV that lasted about 6 months. It wasn't such a big deal - I just could not do any sport or weekend activities. At some point I suddenly felt fine. But fir the rest of my life I have understood that what I had was real and so I totally accept that longer term ME is real.
I was meaning to post something about this in the LC and ME/CFS guideline feedback threads but wasn’t well enough.
I often wonder to what extent self-limiting PVF or PVFS from which people eventually recover overlaps with ME/CFS. Are they different degrees of the same thing? To what extent does appropriate management prevent PVF from becoming ME/CFS? Or is ME/CFS something altogether different, from which people don’t recover whatever approach they take. Or are there two or more types of ME/CFS – one which can result from wrong management of PVFS (from which long term recovery may or may not be possible) and one (or more) which is altogether different and can’t be reversed with any type of management? Or might they start off as the same thing and then some other factor or factors determine whether it becomes permanent ME?
FWIW my ME (which I didn’t accept as a diagnosis for a long time) never felt like a post-viral syndrome that was gong to get better with rest. It felt like something new – and right from day one not exerting myself or “resting” only ever felt like it was stopping me from feeling worse rather than helping my body to heal or recover.
My suspicion is that from onset many people who have a self-limiting PVFS may be more likely to accept PVFS as a diagnosis than someone who has the type of ME that doesn’t get better. I’ve known quite a few people who’ve had post-viral fatigue. They’ve mostly seemed fairly comfortable with the diagnosis and after speaking to them I’ve never been too concerned that they had what I have or that they wouldn’t get better – although I also often read accounts of people with long-term ME (whether mild or severe) and think “that doesn’t sound like what I’ve got”.
I also wonder to what extent an experienced physician (or anyone else) might be able to differentiate between those who gradually or suddenly recover and those who don’t from listening to their account of their symptoms. I seem to remember Chalder (I think) published a paper which linked “alcohol avoidance” to poor prognosis. That paper seemed to confuse cause and effect, but I’ve always thought that alcohol intolerance could be useful clue to understanding the pathology of ME and I wonder how predictive it is of poor prognosis (anyone know of any reliable research on this?) It’s such an unusual symptom in other illnesses.
Similarly, one of the things that eventually made me accept my ME diagnosis was when I read somewhere that people with ME often initially think they have developed an allergy to something or somethings. This was certainly the case with me – I went from being a student with no allergies who drank an average amount for a student who drank too much, to someone who couldn’t tolerate half a glass of wine and felt like I was having permanent allergic reactions to all sorts of things. In fact, the initial treatment my GP tried were various antihistamines, which made no difference.
I don’t like talking too much about my symptoms but there were (and still are) various other specific symptoms which I suspect may have been predictive of a poor prognosis. Of course, I may be completely wrong about all of this – it’s more of a guess than anything based on any scientific evidence – but that’s why I’m raising it, because I’d be very interested to know more.
Although I agree with the draft ME/CFS guideline that the recommendations for sensible management should be the same for anyone who has PVFS or ME/CFS however long they’ve been unwell, I wonder whether it would be useful to delay a diagnosis of ME/CFS for up to 2 years, unless or until we can differentiate between self-limiting PVFS and ME/CFS.
First, it could be harmful for people with self-limiting PVFS to think that they have an incurable illness if that is not the case. I’m not suggesting that patients should be lied to (as I was) by reassuring them that they will definitely get better. But equally they shouldn’t be unnecessarily fearful that they will never recover, as some may with a diagnosis of ME.
Second, it is unhelpful and potentially harmful to people with incurable ME to be equated with people who have or have had a self-limiting PVFS, particularly when those who recover naturally (and/or their therapists/doctors) wrongly infer that whatever treatment they were trying when they started to feel better was responsible for their recovery – although one never quite knows with people who’ve been brainwashed with BPS bullsh*t whether they’re actually feeling better or just telling everyone they do because that’s what they’ve been told they should think and say in order to recover.
Sorry, this is a bit of a ramble and I’m not feeling well enough to go back an edit it but I hope it makes sense.
[Edit – just come back to this and corrected some typos any missing words to make it make more sense]
