A new organisation https://www.notjustfatigue.org/about ABOUT #NOTJUSTFATIGUE The mission of the 501(c)3 #NotJustFatigue is to speak the truth about ME/CFS through creative content that’s deeply personal and unapologetically emotional. Via film, photography, storytelling, and interactive experiences, we aim to connect with people in a way that medical and political rhetoric cannot. We want to confront a long history of neglect, bring those with the disease out of the shadows, and forge a path forward. Together, we can reclaim the narrative around ME/CFS.
#MEAction wrote a news item about this group and interviewed the founder, Elizabeth Ansell: https://www.meaction.net/2024/03/01/notjustfatigue-community-member-launching-a-new-website-today/
If I had been diagnosed with ME I would probably be terrified by the misinformation on this website. I find this persistent hyping tedious and disappointing to be honest. ME may mean muscle pain and brain inflammation but that is not what the illness is. It would help to point that out. And so on. There aren't loads of documented abnormalities. And so on. We have no idea whether pouring money into clinical resources would do any good. Hopefully research will find something but it is n't as simple as handing over $8M to the NIH to get it solved it seems. And handing it over to charities with little understanding of what they are doing doesn't get far either. And so on.
I have not read much on that website. But I did look at the wording on the home page before posting the link and that information seemed accurate. That line is used in the context of explaining what the term Myalgic Encephalomyelitis means. There's a lot more on that web page ( https://www.notjustfatigue.org/what-is-mecfs ) I'm not able to read all the text on that page, but at first glance it does not seem like misinformation to me. But it's a lot of information so I could be missing something! Here's a longer quote from that section you mentioned.
I looked at the site briefly so will not comment on accuracy of material. I am however concerned about the intensity and colors used in relation to the sensory sensitivities many PwME have. (The bright yellow/orange bothered me a lot and (that I know of) I do not have ME.) I also wonder about the speed at which some of the visuals go by and how impacts PwME...
Yes but it then goes on to say that chronic fatigue syndrome is misleading without pointing out that ME is even more misleading since it describes something that does not occur - brain inflammation. I am pretty sure people recently told they have ME will get a very distorted view from this - pretty frightening. Not that ME isn't a serious illness, but if we want to discourage doctors from talking in terms of unhelpful beliefs then maybe it's best not to stoke those on websites. Like saying there are loads of major abnormalities documented - which is straight disinformation.
its horrendous for me I'm afraid, all that movement as well as the viciously bright yellow. The way the graphics load, far far too much movement, i was unable to read any of it. I dont think the site designers know anything about sensory/visual difficulties for PwME.... Seems like needs being sacrificed for it to look 'arty'. As an artist myself i understand something needing to be visually engaging, but its not much good if it locks out people its itnended to serve (edited to add that as a healthy person i'd have thought the design was excellent, modern & punchy - but i wasnt able to look at the content because of the design) I cant read the content, but if it goes on about 'proven biological abnormalities' etc as @Jonathan Edwards describes then it worries me a great deal. And a trrible shame because so much work has gone into it. ETA Its not patients' fault that researchers hype up their findings as if they 'proved' stuff. EDited to add - well done to the person who came up with the idea & put in so much work though. PErhaps a few little tweaks to the design could make it more accessible,
A severe patient, Elizabeth, made this site and film very slowly over 6 years (with help from a designer) Maybe be less critical..? I think she did a nice job with the film telling her story, and the content is fine. It’s a personal project, she can do whatever she wants, frankly! Being severe, she has every right to talk about the horror of this illness. As fo for hyping results about finding biological abnormalities — better to criticize the university PR groups and scientists who overhype their work so much that severe patients and families do not know these results are not necessarily great, reliable or reproducible.
Fair point @Braganca & i should have said that the idea behind doing it is great, & i will edit my post accordingly. My point was that the design of the site with the moving images and glaring flashing colours were really painful & actually to look at & i was a bit shocked by that.
I do agree that the color scheme makes it difficult to read. I switch to "reader view" in my browser (Firefox). I've only read a little bit of the text (can't review the whole thing). While the wording may be over the top in some places (eg, "radical abnormalities") it did not seem bad for a personal project that was done by an disabled ME/CFS patient as a way to explain that ME/CFS is more than just fatigue. There are lots of links to references if people want to read the source documents. For example, here's another section:
I think it is more accurate to say it describes something which we do not have sufficient evidence to conclude that it occurs.
Not really. MRI is a highly sensitive indicator of brain inflammation. There isn't any. Inflammation in brain is not hard to pick up. The brain tolerates only slight inflammation poorly. The term ME was coined, not because of what we now call ME but because of neurological signs found in an acute phase of an epidemic of something never identified.
Perhaps, but I'm not convinced. MRI is a sensitive indicator of swelling and damage in the brain. It doesn't seem to be as good at detecting what immune cells are doing. Perhaps inflammation isn't a good term here as I agree that ME clearly doesn't involve inflammation in the same way or cause damage like encephalitis or MS does. As always I do appreciate your position, however, I felt the need to provide a counterpoint as I would hate to not see this area further explored.
A very fair point. Almost every site gets some stuff about ME/CFS wrong, and many get a lot wrong. Cort routinely gets stuff wrong - I think his uncritical analyses of many new papers is a significant cause of the ME/CFS community thinking that there is existing good evidence of many biological abnormalities. Many ME/CFS charities get things wrong and they definitely should be doing better. I've just reviewed some national guidance to doctors prepared by self-proclaimed CFS medical experts and it was much worse in terms of inaccuracies than this Notjustfatigue site. I agree that the flashing text is uncomfortable. It's great that Elizabeth is making such an enormous effort and it's very brave of her to tell her story. Hopefully someone can work with her to fine-tune her content. It's very hard to get things right alone. I'm sure that if she came here for ideas, she would be welcome.
