Hi Joh,
I am not trying to justify the comments but, if you haven't already, I suggest you have a look at the Hummingbird Foundation
http://www.hfme.org/ and it might help you at least partly understand.
Hi
@slysaint, thanks for tagging me and for offering information - but I'm highly informed on this topic and know the Hummingbird Foundation and follow the discourse closely. Have read up on the history and politics surrounding this disease daily since my diagnosis. I just don't think that boycotting Unrest and the Unrest campaign will be of any help with these issues. What I meant with "I don't get it" and "I can't wrap my head around this" are allegations like "How dare it lie so much about such a serious condition?". Fail to see the "lie so much" parts in Unrest.
Would also be curious to know what the people who loudly "boycott" Unrest would suggest we do instead? Have they started their own campaign or made their own movie? Would they prefer that nothing happens and we're being ignored like for the last 60 years?
Of course I agree that the conflation of chronic fatigue with ME/CFS is at the heart of all our problems. And that the name CFS has prevented us from being taken seriously and prevented research and funding (and was partly created to do that) and is an insult.
I agree with Priya's review on the use of 'chronic fatigue' by a Dr(can't remember the name)
Yes, I was very annoyed too. And he's not the first specialist to conveniently use the term chronic fatigue in talks or documentaries and it baffles me every time.
At the moment ME and CFS are listed together by the WHO under G93.3. I have the diagnosis G93.3. Just because in Germany, the term CFS is used for G93.3, I'm not less sick. I've lost my 20ies and 30ies so far and even if a cure is found I'll never have a normal life because I missed everything that you do and build in these formative years. I'm fed up with hearing that CFS is a joke (especially from fellow patients). I don't think that someone who gets diagnosed by a GP in the UK with the NICE guidelines after being tired for 4 months and having one additional symptom is more sick just because the paperwork says G93.3 (ME) and not G93.3 (CFS). If it makes me somehow more real sick and deserving, one doctor called it ME but never managed to write the promised letter. It's just in part coincidence which term the doctor or country uses for G93.3. GPs in Germany often can't even print out ME as diagnosis because the computer system has filed the ICD-10 code G93.3 with the official German translation "chronic tiredness syndrome". The name is important but I think the content (diagnosis criteria) is more important.
In the discussions in the 1 star reviews people also write that 90% of pwme have no "real" ME and e.g. deny people without an infectious onset an ME diagnosis. They also think that G93.3 is ME and CFS is an R diagnosis, what is not true (at least not in all countries).
Sorry, @slysiant, my rant was not aimed at you.
I know you were just offering an explanation and information. Having a bad (or rather worse) day. That people out there invest their energy to target Unrest that might be our biggest chance in 60 years for a worldwide advocacy campaign instead of targeting topics that are really damaging for us (that we have no shortage of) or doing other advocacy work is upsetting for me. I'm stuck in bed, living in a prison that is my old children's room and want things to change - and am convinced that the Time for Unrest campaign is already helping to create change.