https://www.health.harvard.edu/a_to_z/chronic-fatigue-syndrome-a-to-z This could really do with being challenged. Harvard has had some good material on ME/CFS over the past couple of years, especially with the launch of the Harvard ME/CFS Collaboration. I wonder if it's worth trying to get this changed? I know others have had some luck in the past amending website content.
Send email to Tompkins— please post his reply— thanks. https://www.massgeneral.org/surgery/cem/faculty-and-staff/ronald-tompkins rtompkins@mgh.harvard.edu
It's a small problem. Should be easy for patients to fix it themselves. I'm a bit busy now and if no one else writes an email to Tompkins I'll do it.
Prob want to keep vexatious patients out from reading whatever it is they wrote? Thanks for the alert anyway. Even when we can't read the full stuff it's interesting to see how they prevent us seeing information. I wonder how often this will happen... I know lots of med stuff is behind paywalls, but this seemed rather different to me.
I'm not sure if it's new. Someone on Facebook must have found and read the page, and posted about it on one of the groups.
Could we do a letter addressed to the website's content manager supported by Ron Tompkins or someone else from the Harvard ME/CFS centre?
Maddening info. It is so frustrating the evidence-based material is taking so long to get out there! I'll try to write... ETA: very tapped out with other stuff right now, so can't promise, but it's not right such a well known/respected institution has this type of stuff on its website
Sticking my nose in From this side of the Atlantic isn’t there an ME group in Massachusetts that’s pretty good on the advocacy side? Maybe they would get involved
There's a good one that I remember of but I'm not 100% sure it's this one: https://twitter.com/MassMECFS.
that page appears to have gone. but this one https://www.health.harvard.edu/a_to_z/chronic-fatigue-syndrome is asking you to log in to be able to read it. you are charged for this.
Well the first 2 paragraphs are a mess that confuses chronic fatigue with ME and anyway this Harvard Health site is pushing a lot of dubious stuff, it doesn't look like a serious thing, more of a money-making project. BPS nonsense.
Harvard Health is woo central. Lot of snakeoil without the overt " alternative" positioning of , say, GOOP. To be avoided .