(*Having re-watched Part Two, I've now added to this post in bold at the end.
And Part One is blogged here. **Also, both parts are available on you tube now.
One here and
Two here.)
I'm not blogging about ME in February, or perhaps ever again(!), I badly need a break, so this is a quick response to Part Two, I need to watch again, my thoughts now, honestly disappointed - there was a real lack of balance this week, too much focus on emotions and depression and 'being kind to yourself', which have absolutely NOTHING to do with neuroimmune illness; also, too much pro-Mickel, there should have been someone who did NOT recover with MT. It all just seemed a bit pat, and I still don't understand what MT is! I couldn't follow the steps. And I certainly don't agree with David Mickel that ME belongs to a group of 'fatigue disorders'. No siree.
It just seemed a bit cobbled together this week, there was no sense of narrative, last week's felt sharper.
Delighted for Holly, though, who had clearly been severely ill
(she made me think of my friend described in below's post), and I felt she was describing the ME I once knew, sitting on the stairs to get down one at a time, cos I could not walk, but also - what role does pregnancy play in improving ME, how does she know that wasn't/isn't a sustaining factor? And how did she get to the stage from being so ill to being able to consider pregnancy? That seemed to be pre-Mickel, but was just skipped over completely. But hers was the narrative I wanted more of. Her experience of MT would have been more meaningful to me.
Also, if you are treating someone who also has had depression - Kim the photographer - that muddies the waters. I think from a pure ME p.o.v, we need to see MT demonstrated to work on patients who are not at the same time depressed (or afraid of becoming depressed), or pregnant (absolutely no disrespect to Kim or Allison).
We also needed more Prof Behan - we had to wait 35 mins! (and I was secretly wishing my book would have been on his shelves). Quite emotional seeing him, took me back to the days of hell, when I attended Southern General.
Interesting - he now says that stressors like strokes and some post-surgery states can also trigger ME?
Loved his chat about enteroviruses and mitochondrial damage. He is the man.
Was also a bit peeved - they said - I regularly take part in online debates, I stay away from forums as much as poss! I go to MEA FB - mainly for info - and occasionally Invest in ME, that's pretty much it.
(And I comment on BMJ when necessary.) I neither have inclination nor energy to argue in circles with people you are on the same side as. It sucks the very life out of you.
So, yes, I hate to say it but I feel a wee bit disappointed, but I will need to rewatch, absorb it properly. I think I said 'take psychiatrists away from the research', and I stand by that...
Still, the role of low cortisol/hypothalamic dysfunction - is that the right term? - is interesting in ME - I improved for a *very* short time with ACTH injections - and £5 million would perhaps have been better spent on Mickel than PACE. There's a thought.
On the plus side, no shots of me looking like a bag lady who found her sunglasses in a skip - (my gorgeous precription sun specs just don't look so glam on film) ...
To clarify: approx 47 mins in, the voice-over/ subtitles say that I've 'encountered threatening behaviour' online, which is misleading, I've personally never encountered 'threatening behaviour'. Yes, I've been upset - there is often heated debate between PWME - attributable in large part to the lack of belief and confusion of criteria - and I've been demoralised/dismayed at how disrespectfully people can speak to one and other (especially those who comment anonymously or under pseudonyms), and I - for the most part - have learned to avoid those situations, where whatever you say will be skewed. However, there is also a great deal of support and warmth online, a generosity of spirit. Undoubtedly, the *ugliest* comments I've seen are from members of the public - including doctors - towards people with ME - I've been horrified at times by the prejudice and cruelty. The most upset I've personally been was after going on the Bad Science (Ben Goldacre) forum last year, only because a comment of mine from CIF had been cut and pasted there - needless to say I never went back. As someone said, that is a lion's den - and those people are - I understand - supposed to be scientists. But there is just so much at stake here, after all the heated/recursive/looping threads, after all the laptops and iPhones are switched off, we remain ill, we still have ME.
Pleased with my comments on biomedical research, 48.30 mins in:
'Take psychiatrists out of the equation. Let psychiatrists study psychiatry, let neurologists, immunologists, virologists, let all those good people study ME.'
Update: I'm less disappointed in Part Two on a second viewing. I think the story of ME has been represented in as 'simple' a way as possible (and I mean that in a positive way). 'Trusadh' is a human interest/documentary format, it is not investigative journalism. As I've said before, it would take a six-hour Panorama special to portray what has gone on in the world of ME since my diagnosis. Kim (the photographer) has discussed in a new blog post his experience of being dissed ('CFS is not as real as ME'). I commented on his blog, in a respectful way, to highlight why this may have happened (not that anyone should diss anyone else, it is the medics who need dissed.) And I'm truly happy for everyone featured on Alba who has experienced an improvement in health. I did wonder if the young student featured in Part One had had a self-limiting post-viral state, or maybe he had a milder ME and recovered fully because he had rested sufficiently?
To have Prof Behan saying on television that there is an 'essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense' is just priceless. Also, I didn't realise he had examined some of the original Royal Free patients thirty years later, and that his late wife, Professor of Pathology Dr Mina Behan, had identified abnormal mitochondria in *those* patients.
Psychologist Professor Roddy Cowie rightly points out that scientific debate is often heated, not just ME. However, the history of prejudice against people with ME and the re-defining (hijacking) of criteria is what marks it out. After almost 29 years of illness, I passionately adhere to the theory that ME is neuroimmune and CFS is biopsychosocial, and that it has been hugely harmful, misleading - and divisive - to conflate them. Still, the conflation is part of the narrative, and 'Toxic Tiredness' has shown this. But when anyone starts talking about changing lifestyle, and acceptance and banishing fear, I am pretty sure they don't experience the same illness I experience.
The last word goes to Prof Behan: 'I have not seen any form of cognitive therapy or talking therapy to be of any value. I'm not saying that if someone who is in authority and who offers you warmth and kindness . . . won't have an effect for the benefit, it will, but the answer that it's the cure, I'm afraid, is wishful thinking.'
