Toxic Tiredness (Part One) BBC Alba doc

Part One of 'Toxic Tiredness', the BBC Alba documentary on ME is now available on iplayer for 7 days. I was so nervous before watching (though not being filmed), but am pretty happy with how I come across, and also Dr Shepherd of MEA does a very good job, remarking on 'the major scandal for the medical community' in marginalising PWME the way it has (and does). Feedback online seems mainly positive, though some are saying that severely ill people - and I mean bedridden - are not represented and that is indeed true. I know the makers of the programme certainly wanted to include more severe sufferers, I guess they could not find anyone to take part? It's a tricky one, I'm not sure I would've wanted to be filmed - or could have been - when I was severe, it's a vulnerable place to be, but  unless you are close to someone who is severely ill, it's pretty hard to imagine: 'I don't think anyone can understand unless they witness it', as one of the contributors, a nurse, says. I also loved the comment by a GP, 'The more they push themselves, the more ill they become... it can take three days to recover from one bout of exercise... For the majority, it's a lifetime illness'.

Not nihilistic, not defeatist, just true.

I think everyone who took part is to be applauded, it's brave to put yourself on a platform for everyone to view (and judge!) and you don't know how you are going to be edited (which is really quite scary).  I'm not certain that everyone taking part has - or had - 'classic' neurological* ME  - but the conflation with 'CFS' - the lack of consistent criteria - is now an engrained part of our narrative; also, these are highly edited clips, and it is not possible to capture the full story (illness) of any one of us. At the end of the day, I can only know my own story.

Also, although no longer severe (I describe myself now as moderate with severe dips, I am typically housebound for at least half the week, with essential sofa/bed resting in between), I think  I'm fairly typical of the long-term path from very severe to moderate/severe - with many relapses - major and minor - along the way -  reaching a plateau that you just can't get beyond. I often think of the very severe phases like a grim apprenticeship that we all must serve, and it is utterly tragic for those who remain unremittingly severe.

Five different voices were heard, a sad tale of lives disrupted and broken - and, in one happy case,  mended completely, a young student. I've said before that it can take a decade to adjust to this illness, the shock of it all, re-adjusting to a different life, absorbing the impact. If I'd been interviewed when I was younger I'd be telling a different story than now - I've had *so* long to adapt, change my expectations, my hopes - but I still have my dark moments,  weeping at what I have lost: the photograph 71/2 mins in of me as a well 17-year-old had me in tears when I first watched, my mother too.

I was most moved by the policeman's story, he is the most severely affected of the other four and his ME  effectively 'ended his career' twenty years ago (he had never had a day off sick). I liked the nurse's description of 'an iron bar at the back of my neck, which someone was pressing into my neck' - I know that feeling so well - and also her description of the exhaustion as feeling like 'a busy day at the peats',  that's wonderfully poetic. I was also moved by both the policeman and the photographer talking about the excellent support they've had from their wives and children. I've said before this illness could undo you without strong family support.

I wasn't sure at first about the shaky camera going downstairs/outdoor shots, but the effect of being disoriented is good, it feels otherwordly, and what is ME if not otherworldly? (Incidentally, I had to keep sitting on a wall to rest for the walking scenes, just round the corner from me.) And I loved the mournful but gentle strumming in the background. So thanks, BBC Alba, for tackling the subject of ME in the first place - and letting people tell their stories.  I'm also glad that they included my comment about my ongoing anger at the psychiatric lobby hijacking a neurological illness (I saw it happen, ME flipped like a pancake, 'becoming' CFS in early 90s, almost a decade after my own diagnosis). Part Two is next week, I'm looking forward to Professor Behan,  he is not a man to mince his words. And also two of the people in Part One undergo Mickel Therapy, that is indeed going to be controversial. That is discussed a little here on MEA in the comments thread.


* Yes, 'neurological ME' is a tautology, but it is increasingly used by PWME to distinguish between neuro ME - the real thing - and nebulous fatigue syndromes.

** I was also thinking would be good if they could have filmed me the day after when I was shattered from the day before, it would have been a very different me, not dressed, post-exertional malaise (PEM) in action, just the usual. But I would be too vain, quite honestly, and the crux is: I have my book, my precious book, to tell it like it is.

*** I have just worked out where I appear if you want to re-watch: I am at the beginning and then at these intervals: 7.35 mins, 13 mins, 18.30 mins, 24 mins, 29 mins, 40.50, and at 48.50 mins I read from TsoM and talk a bit about writing it -  the prog did not include my describing  the *years* that took...