1/ A postscript to my earlier (pinned) thread. Thanks to all who supported my comments, and my apologies that I haven't replied to everyone yet (It's been hard to keep track of the notifications, plus I'm exhausted!)
2/ Twitter, unfortunately, has a 25 Tweet limit for threads & I really needed some more space in my original thread, so the final two tweets (24 & 25) had to be pruned to fit. This is what I said:
3/ The response below was left on my thread, but the sender then blocked me so I could neither see the comment nor respond. I'm sorry for any offence, it was not intended, and I'd much prefer it to respectfully discuss issues like this to try to resolve them. 
4/ I share Rob's anger at the way we've been neglected by science & medicine for decades. I've personally endured 37 years of this cruel treatment, due to the appalling lack of ME-specific research. But ME is not, & never has been, defined by which pathogens we have. Nor has CFS
5/ ME & CFS are currently defined by meeting case criteria. If we meet ME-specific criteria (Ramsay, London, ME-ICC etc) we are entitled to be diagnosed with ME. If we meet CFS-specific criteria we are entitled to be diagnosed with CFS. And ditto for ME/CFS (CCC) & SEID (IOM).
6/ Another comment in relation to my point #24 also seems to misunderstand what I was trying to say, and I apologise for that space limitations meant I could not elaborate more fully.
7/ I totally agree that diseases should be separated out into causes. But triggers are not the same as causes & we do not know the cause(s) for either ME or CFS yet. Until we do, we a stuck with a bunch of imperfect case definitions, some of which are better than others.
8/ To solve this whole conflated mess, we need quality research. This is what I meant in my last sentence in #25 of my thread. We need research which sub-types us in meaningful ways. Eg ME vs CFS criteria. Enteroviruses vs Herpes Viruses vs Retroviruses vs Coronaviruses. ...
9/ Epidemic onset vs endemic onset. Predominantly neurological symptoms vs predominantly immunological symptoms. Short Duration Illness vs Long Duration. Male vs Female. Multiple Cases in Family vs One-off Cases. Anything else I've missed (ideas welcome!)
10/ I think we all agree we need far more research funding. In my opinion, we also need to discuss with the scientists who are sincerely trying to help us, why many of us feel there could be different disease entities lurking under the conglomerate most are now calling "ME/CFS".
11/ My view is that ME is likely to be a distinct clinical entity & CFS may be either another separate entity or a collection of multiple illnesses. That's just my opinion, not a fact. The same disease process might also cause different symptoms in different ppl, i.e same disease
12/ So my question is can we all work together to share our experiences and identify what the similarities and differences may be between us? This could really help us to identify the issues we would like to flag for scientists. And how can we help and support each other ?
13/ Coming from New Zealand I may be seeing things through a different cultural lens. As a country, we've just pulled off a (so far) very successful team effort to kick the butt of Coronavirus. We cud see our personal interests needed to be set aside temporarily to protect us all
14/ It's been horrible watching other countries struggle so much to contain the virus - perhaps due to a cultural difference where the rights of the individual, personal freedoms and financial self-interest are all valued above the collective good of the community.
15/ I'm reminded of the parable of heaven, hell and the long spoons. Not wishing to push religion here at all, but it does illustrate the point that when we only care about ourselves we can all suffer, and when we look after each other we can all benefit. theunboundedspirit.com/heaven-and-hel…
16/ So, to the people with enteroviral ME who I have upset - please know I am 100% behind you & will advocate for proper recognition, research & medical care for you. My hope is we can all recognise & support each other, no matter which criteria we meet or which pathogen we have.
17/ We ALL deserve to have our disease recognised. Anyway, it's nearly 3am here (oops) so I'm off to bed. I may be crashed for a quite a while now, so will catch up with the conversation in due course! "Nite nite" from NZ💤😴
