Discussion in 'BioMedical ME/CFS Research' started by John Mac, Jul 10, 2019.
Already the abstract is annoying me.
No mention of PEM, still that bothersome 'fatigue illness' description. And as far as I know, many if not most pwME don't have any remissions.
Anyone just reading the abstract will come away with the impression that ME consists of remitting and relapsing fatigue. If only...
We are being bombarded with low-quality commentary pieces that get us no closer to our goals. I believe this is in part driven by the huge interest in journal papers on this subject. They often become the most highly downloaded and shared papers in the respective journals.
It's part of a special issue of Diagnostics on ME/CFS. I think, correct me if I'm wrong, it is tied to the recent Australian ME conference.
Even some of those onside still use fuzzy terms like "fatigue illness", and "cfs". It would be more helpful if they improved descriptions and terminology.
No remission here - ever. Do they perhaps mean waxing and waning, but still ill? Or, do they mean sick, then recovered, then
sick again, and so on?
The "recent" IOM report is not so recent now (February 2015). In terms of medical progress, maybe it is seen as recent, but I don't think many pwME waiting for better treatments including respect, as well as effective medications see this report as just having happened.
The journal publisher has previously been accused of publishing so-called "predatory" journals.
Abstract aside, it's not a particularly bad paper. Doesn't add anything new but does provide a reasonable commentary on some recent results.
Yes. Especially since the article is better than that. As it should be, given some of the authors' personal experience of ME. Authors are:
Eiren Sweetman 1, Alex Noble 1, Christina Edgar 1, Angus Mackay 1, Amber Helliwell 1, Rosamund Vallings 2, Margaret Ryan 3 and Warren Tate 1,*
A positive note: looks like there'll be another paper from this group, based on Sweetman's PhD work if I've interpreted things correctly (bolding mine)
Ramsay spoke about the variability of ME as one of its defining signs. Relapsing/ remitting could simply mean that symptoms are not the same all the time. I can see fine this morning, maybe not tomorrow. This evening I could have a bad headache, yesterday I had to spend the afternoon in bed instead of my recliner and so on.
In other diseases things stay much the same. Untreated thyroid levels don't go back to normal but my heart rate goings down.
I do wish they would take more care about what they write though. It should be explicit and match our experience.
My pet hate is not emphasising that PEM is often DELAYED. It is very different from other illnesses where they feel they get worse after exertion but they are not fine for 2 or 3 days then collapse so it is an important point that it happens at all.
Here is the link to the whole special edition.
Includes a paper by McGregor et al, the CureME team, Lenny Jason et al and Frank Twisk re ICC.
Separate names with a comma.