Some comments from me:
Condition versus disease
AfME sometimes uses 'condition' e.g. 'with people claiming the condition is not real'. I find the term condition is rather ambiguous, very minimising and quite 'othering', especially when used in 'their condition'. IOM managed to call it a disease, and why not?
Disease: a disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury.
Function is substantially affected and there are specific symptoms - so, a disease. I actually think that this is something that could be mentioned in advice to media.
Myalgic Encephalomyelitis, M.E.
I understand there are regional preferences, but I'm strongly in favour of ME/CFS. It avoids claiming biological pathology that might not be true, it acknowledges that many people have been diagnosed with CFS. ME is, I think, a problematic abbreviation, all too easily parodied as being appropriate in an illness that is really just hypochondria, caused by being overly preoccupied with oneself.
Do: Consult as widely as possible with people with M.E. when writing your article
Do: Ask Action for M.E. for advice if you are unsure what language/tone/ imagery is appropriate to use
Not every article requires wide consultation, and suggesting that it is necessary might well put some journalists off. The key is getting hold of people who understand the issues. That's part of why I think this initiative should come from Forward ME; if the key charities are listed as able to provide advice and comment, there's a better chance that the article will include good information.
Don't: Refer to “fatigue” or “chronic fatigue” which can be a symptom of many different conditions
So much of the wording slightly misses the mark and ends up adding to the confusion. This is one of them. It's ok to refer to fatigue as a symptom. I think they were trying to say, 'Don't refer to the illness as "fatigue" or "chronic fatigue". Chronic fatigue is symptom of many conditions.'
Don't: Just refer to “tired” as a symptom of M.E.
I'm not sure what the 'just' is doing there. So is it ok to refer to "tired", or even "being tired", as a symptom of M.E. if you also mention other symptoms? Perhaps it should be
'don't use the word "tired" when describing ME/CFS. "Tiredness" suggests sleepiness and the potential to fix it with a good sleep. Better words are "debilitating fatigue" or "profound exhaustion".
The wide variety of symptoms is mentioned already.
Use the term “high-achievers” for those experiencing M.E. but able to function more ‘normally’
I don't think this is a common problem; it's probably not worth saying.
I've run out of energy, so will just add a few more:
M.E. doesn’t discriminate and can impact anyone. Yet at present there is no definitive diagnostic test, no universally effective treatment and no known cure.
'Doesn't discriminate' is oddly anthropomorphising. 'Can impact anyone'? What does that mean? Just say 'ME/CFS can affect anyone.' A definitive diagnostic test - never mind the 'definitive'. There is no diagnostic test. 'No universally effective treatment' - that makes it sound as if there is no one treatment that fixes everyone, but leaves open the possibility that there are treatments. It smacks of pandering to the rehabilitationists who think what they do makes a difference. I think this is a good test of where AfME actually is - are they fence-sitting so as to not upset the people who think that gently applied goal setting and exercise and CBT are useful treatments? The statement should be 'There is no diagnostic test, no effective treatment and no cure'.
M.E. is not the same as Long Covid and the two terms should not be confused with one another
This just adds to the confusion - I find it really concerning that AfME thinks this is good information to be giving to the media. I think it should be explained that ME/CFS seems to be triggered by a range of infections such as glandular fever, Q-fever and most recently by Covid-19. Long Covid includes a variety of consequences of Covid-19 infections, but a substantial percentage of people with persisting symptoms 6 months after a Covid-19 infectious are being found to meet ME/CFS diagnostic criteria.
Be careful about referring to recovery from M.E. e.g. referencing that person “had M.E.” without providing the full context of the condition. While some people do recover from M.E., many more do not and many relapse repeatedly
I think a key thing to inform journalists of is that the majority of people who have had ME/CFS for 6 months will go on to recover, but recovery rates are low once the illness has persisted for 2 years. Natural recovery is often attributed to whatever treatment the person was trying at the time.
Over the past 35 years, Action for M.E. has worked to improve the lives of people with M.E., taking action to reduce the isolation experienced by many and working to create change.
AfME has a problematic past. For sure, they have been doing much better, but whitewashing the past is going to draw criticism and cynicism. There's no need to refer to AfME's history here. Just say 'AfME works to improve...'
It's quite puzzling how AfME did such a poor job of this. I don't know why AfME doesn't workshop initiatives like this. Why not create a thread in the forum to gather ideas? Why not put out a call on social media for comments before drafting something?
