A message to the forum's Facebook page has highlighted that ME Research UK, while preferring that the Canadian or International Consensus Criteria be used, are willing to accept patients selected using Fukuda. We have a thread on the latest research published and funded by them that uses Fukuda here, https://www.s4me.info/threads/eleva...ction-a-case-control-study-julia-newton.1745/ and comments from MERUK about the use of Fukuda can be seen in the comments on this Facebook post of theirs, Does this issue need addressing? Do we need to encourage MERUK to drop the use of Fukuda altogether? Will this reduce the number of applications for funding that they get?
My personal view, Fukuda probably does need to be abandoned, but we can get around to it once Oxford has been eradicated from use, to the extent that is possible.
I can't find it at the moment, but Leonard Jason has published something showing that there are three key criteria that capture almost all ME patients (something like 94% if I remember correctly): PEM, cognitive impairment, and unrefreshing sleep. Since Fukuda doesn't require these, and, then my vote would be yes to asking research groups/funders to not rely on Fukuda. 1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4871625/
I believe Dr. Montoya and others have used Fukuda in previous research and have been successful but it is mainly due to their being very familiar with CFS and using PEM which is only an option, but they do use it. They are also very well aware that cognitive impairment and unrefreshing sleep are a part of CFS. The problem with CCC and ICC is they are harder to use on a clinical level and in order for recruitment their clinicians are usually diagnosing them with FUKUDA and then the researcher further investigates applying the optional symptoms of FUKUDA. Some research does further filtering with CCC and ICC. But in the US when FUKUDA was used in research, the researchers usually made a note that PEM was required and would include any other symptoms of unrefreshing sleep and cognitive impairment. Just a note, I don't think with CCC or ICC PEM is required. I would look it up but it looks like the platform MEpedia runs on is experiencing problems. I will look up later and post here.
I'm not convinced ICC or CCC are that great either, so tend to not get too concerned in disputes about the criteria used. IMO it really depends on the specifics of the research being done. There is a danger that focussing on a restrictive criteria prematurely could make it harder to identify meaningful sub-types within ME/CFS. Loose criterias have caused problems, but often that's more because they've been used in inappropriate or poorly conducted research. If we could have more confidence in researcher's competence I could see potential value in research that made use of looser criteria.
I don't see why they can't use both. I find that frustrating about meruk because Fukuda with optional PEM is CFS and they're funding quite aloe of that whilst being MERUK. Combo criteria is what the biobank and others have done. If we are talking uk funding weak criteria the Mitochondria MEA/MRC study was Oxford or combined? Edit the thread on Facebook is a little confusing. They are saying if recruiting from clinics the clinics criteria - never ICC/ccc - will be used. Before that they say none are perfect, I've found them ambilvalent in it in the past and Newton is mainly Fukuda user? I think there's a big problem in any type of exercise studies where PEM criteria isn't required. Newton has done an exercise study using Fukuda, it tells us little about ME AFAIC because if PEM isnt there then ofcourse exercise is likely easier.
For studies at Stanford, I was evaluated using CCC. Apparently I passed CCC, because they keep asking me back. However, before that, I was an SEID patient (which requires PEM as well).
Selection criteria are, and will remain for some time yet, a treacherous minefield. Including the problem that in the hands of different researchers the same criteria will not necessarily produce strictly comparable patient cohorts. The Oxford criteria had to go, and I want PEM as a compulsory core component of any criteria. Beyond that the best we can probably do for now is to make sure that the criteria used, and the way they are used (i.e. any modifications), are properly recorded so that at least stratification is possible.
If they use Fukuda, they need to stratify for CCC or ICC too. I simply don't believe that looking at a more heterogeneous patient group will provide meaningful answers unless you then split the patients up by criteria. Inconclusive results from too-broad criteria don't seem to be giving us clues about subgroups at all, but rather making it so that any data we do have is contradictory.
Without PEM, it’s a fundamentally different condition. It is possible that there is an earlier stage of our disease which does not include PEM, but that is still a different condition. Short: Definitions like Fukuda which do not include brain fog and PEM are worse than useless.
I think Fukuda needs to go ASAP because it doesn't require PEM. For me, an ME definition has to require PEM and in the definition, PEM must be very clearly characterized.
