Monday, 30 January 2012

Toxic Tiredness - (Part Two) BBC Alba

Part Two of 'Trusadh' tonight. I'm told I just appear briefly, so I'm much less anxious, I was a wreck last week, really! Professor Behan is featured tonight, the consultant neurologist who diagnosed me in 1983/84. He has done a lot of work on ME and Coxsackie. Also featured is the highly controversial Mickel Therapy, which is a 'cure' offered by David Mickel, a GP in Aberdeen. It is a 'talking therapy', but he does *not* think ME is perpetuated by false illness beliefs, he believes it is 100% physical but down to a faulty hypothalamus - at least that is my understanding (although, incredibly, he doesn't believe it is triggered by a virus). It seems a bit like Gupta therapy to me - 're-training the amygdala' - which I tried after my book came out when Ashok sent me the DVDs for free, no strings at all: I did try saying 'stop, stop, stop' - in the supermarket, I usually kick my basket along the ground in the queue 'cos I can't carry it, but it didn't help, my arms still burned. But I think he also returns your fee if you try it and it doesn't work (though I may be wrong here). I did find the meditation parts relaxing, but no more or less so than any other meditation CDs.

My view is if you *want* to try such therapies - good luck, it can't really harm you - unlike GET - and is very different from being forced to do CBT by big bad wolves (see previous post) to reverse your 'false illness beliefs'. It's when you are told that if you don't get better that you don't want it enough, or you are not trying hard enough - that's when you want to stab people. (And Esther and her LP on children just makes me shudder.) But I understand the dread of the ME community: if a talking therapy like Mickel is seen to be helpful - for some - it just  reinforces the belief (by those on the dark side) that the illness is not physical. Bring on GET!  I can just hear the NICE cheerleaders: ra ra ra!

I also can't see how you would even be remotely 'well' enough to try MT when you are severe, or even be inclined to - how would you get to the sessions, or do they visit you at home? And, seriously, how can a therapy like this affect a neuroimmune illness? How?

I would in all honesty be one of those who said, Ach, if you get better with Mickel  then you didn't have ME to begin with, but my friend who was also diagnosed by Prof Behan (she also had Coxsackie virus) was hellishly and unrelentingly ill for  two decades, more ill than me, at her worst; over the years, she made some progress but nothing near full health and when she tried Mickel, as sceptical as the rest of us, I think no one was more surprised than her when it worked. She felt well enough to go on to have two wee lovely children, and while I am truly delighted for her (she knows this!), I still don't get it, and am not curious about trying it. She has blogged here, but she does not update very much these days. 

I didn't discuss  the treatments I'd tried, in the documentary, so here they are, the ones I recall, from eighties and nineties:
  • ACTH injections (helped a bit when i was at my most severe, immediately felt like I would not die that night)
  • Imunovir (clinical trial, anti-viral drug) no change
  • Efamol Marine (evening primrose oil) no change
  • Plasma exchange with immunosuppression (when I was at my most severe - made me worse initially but after 6 months, microscopically slow improvements)
  • Intravenous vitamin C and magnesium (helped a bit when I was severe (had relapsed bigtime), I would have boosts now  if I could)
  • Anti-candida diet/anti-fungal drugs - waste of money and time
As I said last week, what has truly helped me is time and resting, resting, resting and pacing. Overdoing it always makes me worse.


(Extract from The State of Me,  Chapter Six)  

The new plasma was from a Polish donor. The technician told me I had great veins and that I might feel faint during the proceedings. It took three hours. He told me what Highers his son was doing and what colour of carpets him and his wife were getting for their new house. When it was over he said, That’s you, you’re half Polish now. He handed me a see-through bag of my old plasma. It was the colour of dirty goldfish water. A porter wheeled me back to the ward and delivered me to Bob. I had the bag of old plasma on my lap.


Tony Mach said...

English not being my first language I am not sure, but shouldn't that be "unlike" instead of "like" in that sentence?

"My view is if you *want* to try such therapies - good luck, it can't really harm you - unlike GET" …

You want to say that GET can really harm you, don't you? (After trying to read a confusing study today, my logic is broken I'm afraid…)

With regards to the effect of MT: ME/CFS is known to have "spontaneous" remission (without intervention) in some patients, even after a long time (the work of Dr. David Bell or the Hickie et al 2006 study "Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study" come to my mind) – so without a properly set up study, without a proper control group, and without enough patients in both groups, one patient who got better doesn't tell us much. The media should know better, but obviously they don't. As some people say: The plural of anecdote is not data…

nmj said...

Thanks, Tony, for pointing that out absolutely, meant to say GET *can* harm you! Will fix. I do struggle with double negatives, my concentration is appalling.

Needless to say, I am well aware - as is my friend - that improvements *can* and do happen spontaneously with time, we have both lived with the illness for *many* years, after all - but I am not going to deny her experience of MT, even if I remain highly sceptical that MT would help me. I have said more on this thread where someone asked me why I would not try:

And I am not here to defend it, my involvement with Alba prog was explicitly nothing to do with MT. I am more telling my friend's story and defending her against accusations of not having genuine ME - were they to occur! - and if you wish to discuss MT in depth, I cannot as have not tried it. And it is precisely because of the lack of science behind it, I have no interest in trying it.

One of the other programme contributors tried it, he blogs here, and he features tonight.

nmj said...

Also, the prog has not been aired yet, I will eat my hat if it turns out to be a defense of MT rather than simply an unbiased narrative of a treatment some people in Scotland have tried with both success and failure.

Kim Ayres said...

Less than hour until the programme comes on - hope it's been edited well :)

I've used the label CFS/ME to describe my condition because that's the label the doctor eventually gave me. I can't argue about the technicalities or whether it's neuroligical ME because I've never had a brain scan. However, I've never put much store by the label because all it's meant is I've suffered from debilitating tiredness, CBT and GET didn't work and there's never been any prospect of it changing. I was resigned to a lifetime of it.

What I can say is MT has had a significant impact on me. It's not a coincidental spontaneous remission and I can see how and why it's working.

So long as I don't get pounced on or receive death threats from people who think I've somehow betrayed the community for going for MT, then I'll happily write more about how and why I feel it's been working, over the coming weeks

Would you believe it? My word verification is "non trite" :)

nmj said...

Hey Kim, Yes, word vers have an uncanny way of being prescient ;)

To be honest, my interest in tonight's programme is mostly in hearing what Professor Behan has to say, the MT thread is quite secondary to me.

I'm happy for anyone who feels better after it, but, if anyone else wishes to comment on MT - for - or against, after the prog has aired, PLEASE hold yr horses, this is not the place, I'm still shattered, after a week of Alba post-mortem - and my thoughts on MT are clear, I don't have anything to add; my reasons for mentioning my friend who benefited from MT, also clear.

Hope there are no horse's heads on yr pillow, Kim, cos it worked for you. ;)

Okay, I'm off.

nmj said...

My thoughts: Honestly disappointed - there was a real lack of balance this week, not enough neuroimmune ME, too much focus on emotions and depression and 'being kind to yourself' which have absolutely NOTHING to do with my illness; also too much pro-Mickel, there should absolutely have been someone who did NOT recover with MT.

Delighted for Holly, who had clearly been severely ill, 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 be pregnant?

We needed more Prof Behan (and I was secretly hoping 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 post-surgical states can also trigger ME?

Loved his chat about enteroviruses. He is the man.

I certainly don't feel people watching Part Two whould come away with any idea of what ME, the illness I have, is.

I 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 and occasionally Invest in ME, that's it.

I neither have inclination nor energy.

I hate to say it but I feel a wee bit gutted, will need to rewatch to see what I said, I think I said 'take psychiatrists away from the research' and I stand by that...

nmj said...

So maybe I need to eat my hat?