I think it's pretty good in most respects. Some common problems: I don't know why they don't use ME/CFS, which seems to be the standard term. And, that damn word "complex", which means whatever you want it to mean. There's no acknowledgement that recovery rates are high initially - there's at least as much evidence to support that as the "5% make a full recovery" and I think there's more evidence. If we don't acknowledge early recovery rates, scam merchants will claim to be miracle workers in newly diagnosed patients, when it's just the impact of time. This implies there is a cure that helps some people. Where is the evidence for that? I think that's a major problem, again leaving the door wide open for scam merchants including BPS proponents. I think the issue of Long covid was well-handled:
Hi @Hutan, I know some people recover early on with ME, but I've never seen it termed "high" recovery rate. The Canadian Consensus Criteria Overview says " 5 of 6 studies indicated 0% to 6% ( the sixth study indicated 12%) of adults return to their pre-illness level of functioning." (Page 1) There isn't a mention of time frame. I have seen ME specialists' comments noting some people get better within 5 years. A ME specialist in Canada told me I would recover in 1 to 3 years. By the time they told me that, I had had ME for 6 years, but had just been diagnosed a few months earlier. It was assumed I hadn't been sick for very long. Good point about noting possible early recovery, as scam artists will claim those victories for themselves.
Agreed, the "no universal cure" concept, or some things work for some and not for others, may keep people on the hampster wheel of hope, spending money and energy, continually trying fake treatments.
Based on prospective studies of post-infection illness, there is a declining curve of people still sick over the two years following onset. Typically, from memory, it's around 10% of people infected with certain trigger diseases who still have symptoms that significant affect daily life at 6 months, declining down to 2% and then even less. So, most people with persisting symptoms at 3 or 4 months do recover; recovery rates really are high. Think of people who spend a few or 6 months recovering from EBV - there are a lot of them. Just lately we've seen a couple of papers I think, that suggest lower recovery rates in people who have post-Covid ME/CFS at 6 months. But, these are fairly small studies with possible biases. We could definitely use more good information about illness trajectories. I would have thought we'd have lots of robust information on that by now. But we don't seem to.
Yep, I have heard of 6 month recoveries from mono. Even a couple people who were hospitalized for a time, who then recovered. Of course, most people recover from infections. So that is one big reason why we are looked at askance: "You can't still be sick!" But then, the CCC info seems to be saying something else entirely, as per the quote in my earlier posting. We do know there are post "recovery" symptoms for diseases such as Ebola, and others. And, EBV now more strongly correlated with MS as a possible trigger, may also indicate there can be lasting damage from infections. In considering your info, it is not surprising medical advice early on was recovery will happen in one to three years. Agreed, we do need much better numbers to see what's really going on. The popular picture with a lot of infectious diseases is you either recover or die, there's no in between. That in between picture has emerged, but is still not well known.
Yes, that's interesting. It's a problem. Reading about that recent COFFI meeting where the BPS people were wanting to attack these ideas of extremely low recovery rates in ME/CFS, I do think we need to improve in our educational materials and things like the CCC. It's a more complicated story to talk about high rates of recovery in those first couple of years and then very low rates after that. But if we don't, the BPS people can fairly criticise us for presenting an unduly negative story to people still in those early years.
Yes, presenting a negative picture to pwME who have had it a short time is a concern. On the other hand, many people do not know how bad ME can become: the hidden 25%. Most people see ME as a short term mild inconvenience. Omitting the worst case scenario has perhaps not done us any favors. There is another complication, as institutions such as the IOM/NAM estimate a very large percentage of people go undiagnosed. And, diagnosis has of course been muddied due to the use of some vague, over inclusive definitions. As well, medical education about ME has been very neglected. Medical codes for ME have only been recently introduced, and are still not universally available. Another issue that is troublesome is that of the personal definition of recovery. Some say they are recovered when they are not back to full function. They may be accepting lower function, have convinced themselves they are well, or believe they will be well if they deny symptoms, etc. (The BPS method.) Have some of these early recovered been mistakenly diagnosed as having ME? These people may be some of the early "recovered", but did they really have ME? This is altogether quite a complicated picture.
We really lack good studies that could definitively answer these questions on prognosis. Do the people that recover in the first few years have ME or are their symptoms confused with a transient post viral fatigue? Are the people that seemingly recover at risk of subsequent relapse? After some four or so years I believed I had recovered (initial sudden onset associated with active EBV infection), but subsequently over the Millennium New Year, associated with an assumed bout of seasonal flue, I suffered a significant relapse. With some fluctuations, overall since then I have experienced increasing numbers of symptoms and significantly reduced activity levels.
I've just got around to reading this factsheet. I agree with the above criticisms but I think it's pretty good overall. Good enough, for example for people to give to their carers and family and friends to help to explain why we can't do what they may think we can, and why carers shouldn't push us to try to do more, especially given I think carers are told to encourage clients to do as much as they can for themselves. I also particularly like the symptom description that clarifies 'fatigue' as "feeling very ill and weak", which clearly distinguishes it from 'tired all the time' and may help prevent the 'I feel tired too' reactions from healthy people. I also like the fact that they spell out that PEM can last for days, weeks or permanently. If I decide to employ a care agency or personal assistant again, I think I would use this as a good way to inform them about ME. Edit: I also like at the bottom of the first page in large print: "When pushing harder can make you sicker..." That's what I have used to explain in one sentence what ME is to people who know nothing about it.
Very good overall. Roughly half of those with long COVID meet the criteria for an ME diagnosis. I would not use half, good chance that is too high. At least qualify it. Up to half,... My favourite version is: The more we do, the sicker we get.
Thanks for noticing, it's great to see LTSE - Long Term Symptom Exacerbation mentioned, shame it is not a peer reviewed paper.
