Arrrggghhh, I’m going to rant. A small section of the M.E. community online make my blood boil. They are dominating, confrontational, know-it-alls whose sole purpose in life is to have the last word. They are the reason I stopped taking part in Facebook groups (including the 25% Group Facebook group, despite the fact I’m a board member of the 25% Group, and the ME Association Facebook group) and forums such as Phoenix Rising (despite the 20 years experience I have of all things ME which could be really beneficial to others, particularly the newly diagnosed) and decided to blog instead (where I can block users or individual comments).
We need some strong, intelligent activists in the ME community but there is successful activism and there is activism whose sole purpose seems to be to antagonise people (usually other ME sufferers, WTF is that all about?). We have brilliant activists like Jen Brea who are taking the case of ME forward with grace, humour, determination, strength, intelligence and not an ounce of confrontation, and we have activists (I’m not mentioning any names, but go on any ME forum and the same highly vocal people will show up time and time again) who make us all look like psych patients – trust me when I say that over the last 20 years I’ve come across them all, both in the UK and America.
There was a thread on a Facebook site recently about the name change, which I gather is currently being debated over in the States (unfortunately I don’t have the energy to keep up with the political scene over the pond). Someone said that Americans should call it ME “like they do in Europe”. I piped up that I live in Europe (the UK) and that, actually, we don’t call it ME. Patients all want to call it ME, but doctors all want to call it CFS, so the compromise in the UK is we call it ME/CFS. I said that neither patients nor the medical profession are realistically going to back down, so a change of name is probably needed. Some annoying person replied to my comment that “CFS was coined because the Holmes committee couldn’t make up their minds about the Tahoe outbreak, and settled on using a provisional term until the differences between ME and CFS were studied. The CDC did not rename ME at this point. Those who say they did are skewing the history.” What the flying fuck is he on about? I said I lived in the UK and only commented on what happened here. The UK is not governed by the CDC and when we were debating the name some years ago we did so without involving the American health department. If he wanted to make a general point feel free, but he replied directly to my comment, in other words saying I was “skewing history”. I have no idea what he was twittering on about, but yet again it’s put me off making any kind of comment online – I get sooooooo tired of these people arguing for the sake of it, and with other sick people who simply don’t need the hassle *big sigh*.
I stopped posting on the 25% Group facebook page after another member argued with me on the physical basis of ME. I kept saying to her “I agree with you. ME is physical. I’m not sure what your point is” and she even argued with that and spouted again all the facts which point to ME being a purely physical disease! She was a prolific poster and I just knew I couldn’t avoid her, so I left the group.
I’m not sure what these people are hoping to achieve by constantly confronting other ME patients online. They argue the same point over and over again, harping on about the history of ME and how it’s physical not psychological and what it should be called. They’re preaching to the bloody converted (I’ve never called my disease CFS and never will) and I’m not sure what they’re hoping to achieve. I just wish they’d bugger off to be quite frank, so that I could join in with social media without their annoying presence.
There are similar people on all social media sites, including the mast cell and EDS communities, but the ME community for some reason has a lot more than its fair share. Some of them, quite frankly, need therapy (I’m thinking in particular of those who made death threats to the UK doctor Simon Wessley for his psychological stance on CFS) and all they succeed in doing is giving people with ME a bad name (I actually blame many of these activists, to some degree, for the poor public perception of the ME population).
On to calmer subjects. Someone posted a short online IQ test on my Facebook page recently, so I thought I’d have a bash. I expected to do reeeeally badly, considering some days I can’t remember who I am or what I’m supposed to be doing, but amazed myself by getting a score of 130 (an average IQ is 90-110). Part of my brain is obviously still working perfectly normally, which is highly encouraging, so why do I feel like every cell in my brain is defunct? I have the memory and attention span of a gnat, have to count on my fingers, long ago gave up trying to spell (thank you spell checker, even though you’re American and spell my English words incorrectly – it’s cheque not check and mould not mold just for the record 😉 , and have to leave alarm reminders on my mobile phone to put the bins out every Sunday and to do my Tesco shopping. I do not feel in any way “gifted” intellectually, despite what the IQ test revealed, and think the test is probably just a pile of old crap 😉 .