Saturday, January 28, 2012

ME, me, and Gaelic TV

On Monday past I was on the telly. On Monday coming I will be again in the second of a 2-part programme about CFS/ME and the controversial treatment, Mickel Therapy.

It began last summer when I was contacted by a researcher for TV production company, Mac TV, who had discovered my blog and some of my writings about CFS/ME and wondered if I spoke Gaelic. I said I didn’t, but would be interested in being kept informed about the programme they were planning.

I can only guess they were struggling to find enough people who a) had CFS/ME, b) spoke Gaelic, and c) were prepared to have a TV camera stuck under their nose while they were followed through a treatment not sanctioned by the ME Association, because they got back in contact to ask if I’d be up for being involved in the programme.

Towards the end of August I was visited and interviewed by the director, Robbie, and filmed talking about the effect CFS/ME had had on me over the past 5 years.

The filming process is distinctly odd on a number of levels, not least the fact they need to shoot quite a bit of other footage than just the interview bit. They also need to film all the cutaway shots – one of which involved me going for a walk up the street with a camera stuck to a metal frame attached to my shoulder, so it stayed in a fixed position in relation to my face, which it was pointing at. So as I moved about, my head appears to remain in place and the background constantly shifts.

The next thing to film was my first meeting with Dr Mickel, the guy behind the controversial treatment. He’s usually based up in Elgin, in the north of Scotland, so this meeting was arranged in a hotel just outside Glasgow.

Subsequent sessions with Dr Mickel were done via Skype, and in mid-November, Robbie returned with Douglas the cameraman to interview me about what impact the sessions had had on my condition.

Originally it was only going to be one programme, but as there were several other people with CFS/ME being interviewed, as well as the head of the ME Association, Dr Mickel and a few others, they felt a one hour programme wouldn’t do it justice, so put together two. Although personally I think they could have easily made a 10-part series.

Part 1 was about what the effects of CFS/ME are, and what it’s like to live with it – from dealing with doctors to the impact it has on those around you.

Part 2 will be following a couple of us through Dr Mickel’s treatment and the controversy surrounding it.

For a limited time (possibly only until Monday), episode 1 is available on BBC iplayer here.

It is mostly in Gaelic with English subtitles, apart from the input of Dr Shepherd of the ME Association, an ME sufferer from Edinburgh, the wife of another ME sufferer and, of course, me.

I had thought they might put up Gaelic subtitles when I was talking, but apparently everyone in Scotland who speaks Gaelic, also speaks English, so they don’t bother.

Unfortunately, access to the programme is limited outwith the UK, and I’m not allowed to upload it to YouTube for copyright reasons.

I would urge anyone to watch it if they can - not because I'm in it, but because it does give a very real sense of what it's like to live with the condition. I found the interviews with a retired policeman who's had it for 20 years, absolutely heart-wrenching.

Part 2 of the programme, Trusadh, is being shown at 9pm on Monday 30th January on BBC Alba, after which I’ll write a bit more about how I got on with Mickel Therapy and the impact it’s had on my CFS/ME

23 comments:

Allen Capoferri said...

Sounds like great fun. Maybe I could see it at a later date in the states.

Pat said...

Fun it isn't.
I've just watched part of the tape and find it absorbing and worrying. I daren't watch anymore just now as we have a lunch date but will catch it later.
It was great to see your cheerful face. It really is an awful affliction not least because there is doubt amongst some of the medical professional. This should go some way to convince people.
The language makes it quite poetic - like a long lament.

Cusp said...

Hi Kim, I'm a Blogger chum of Nasim who was also in the doc. I am also a photographer (well I was before the BIG CRASH) and have M.E.: so thats three things we have in common :)

Really interested to see the way you have persevered with the photgraphy depsite the ravages of ill health and trying to maintain family life (I have two teenagers)...4 things in common: I lied

Thought the prog was great and I agree that probably the most touching story was the policeman. he lookes a broken man.


I've had M.E. for nearly 40 years but only diagnosed 11 years ago.

I shall follow your blog(s) with interest x

Eryl said...

I'll see if I can watch it tomorrow. It must be a bit odd walking around with a camera stuck on your shoulder. Can't wait to hear if the controversial treatment made a difference.

Guyana-Gyal said...

I won't be able to watch :-(

But just knowing that you're overcoming it...you said so some blog posts back...has cheered me. The fact that you've suffered from this, yet have been able to achieve so much, is extremely heartening and inspiring.

I wonder how many in my country suffer from it and are not diagnosed. Wow.

On another note...I was quite interested in the tv production part. I guess old habits [former tv producer's interests] just don't go, eh?

nmj said...

Hey Kim, Was sure I left a comment yesterday after you came to my blog, but am so wrecked with post-Alba commentary I am in loops, not sure what I have said and where. Part Two is going to be interesting - and controversial! - with its focus on MT. My own position is how on earth can a 'talking therapy' affect neuroimmune illness, it makes no sense, though at least Dr M is not promoting 'false illness beliefs', which is clearly a red rag to a bull for PWME, as I stated on the prog.

Also, my friend who had severe ME for many years - we were both diagnosed in 1980s by neurologist Prof Behan, post-Coxsackie virus (Behan also features in Part Two), improved on MT , so even though I am pretty sure it could not help me I cannot say it did not help her - and she now has two wee children which is miraculous as she was so horribly ill for twenty years, so I am thrilled for her. Though pregnancy often does help some women, though then they sadly relapse after they have given birth. My friend is certain MT helped her though her own MT therapist (who'd had ME herself) has now relapsed.

Anyway, this is much longer than I intended, and I will def hit publish this time to ensure my comment does not get nabbed away, take good care, warm wishes NASIM

Conny said...

I wished I could see it, too! Do you think there will be a link somewhen in the internet, would be highly interested!!!!!

nmj said...

Part one is actually on youtube now, not sure how long it will stay for, or who posted it:

http://www.youtube.com/user/IloveCBT

It has been broken down into four 15 min segments parts, Trusadh, the series is called.

I have also written a novel based on my experience of ME, it came out with Harper Collins in 2008, if anyone is curious!

nmj said...

part 1 http://youtu.be/MkiIjVeYcZU

Part 2 http://youtu.be/JxjzbkaXgkM

Part 3 http://www.youtube.com/watch?v=8yxORPW0atE

Part 4 http://youtu.be/LaxjmTRq4qo

sorry, that link maybe does not work, maybe these are better?

Nechtan said...

A really insightful documentry. Wish it was aired more main stream as its a condition most people are unaware of. Though you can't fully understand it without experiencing it.

I like the analogy of the power chord. I don't have ME/CFS, to my knowledge, but can relate to that. Especially walking where you reach a point out, it happens but you still have to make your way back home.

I hope something good comes of this. We have made such great advances in finding remedies for fatal illness. I do wish some further research would be done on these very ambiguous conditions that are difficult to diagnose and have virtually no agreed path to recovery except to try and find one on your own.

All the best

Nechtan

Kim Ayres said...

Allen - I take it you mean being involved in the TV programme sounds like fun, not the illness... I don't think there are any plans to show it in the States, but you'll see Nasim has posted some links in the comments to where you can see it on YouTube :)

Pat - unlike some, I was fortunate in the fact I didn't have to face sceptical doctors. Sceptical people I know, however, were a different thing.

Cusp - welcome to my Ramblings. Interestingly for me, the photography has been part of my salvation. Before that I was actually trying to be a writer and had to give it up because of the ME/CFS - the brain fog proved too much

Eryl - I'm looking forward to part 2 - I have no idea how it's been edited or what conclusions will be pointed to. I know I have benefitted, but I don't know about the woman from Lewis who also went through the process

GG - See Nasim's links in the comments for links to it on YouTube, and if you have any questions about the filming process - at least the bits I was invovled in - then just ask :)

Nasim - welcome to my ramblings and thank you for taking the time to write and post the links - I have a few friends outwith the UK who have expressed frustration and not being able to see the programme on BBC iPlayer.

Although it is a "talking therapy", having been through it, that label feels misleading. Really it's about learning how to listen to what your body and deeper emotions are telling you, and then adjusting the way you react to them. In a way, you could say it's more like re-programming your reactions so we stop reinforcing particular patterns that are flooding our bodies with unnecessary chemicals/hormones etc, and create new pathways instead. I want to see how the 2nd programme turns out, but no doubt I'll be writing more about this in future posts.

What I will say is there's nothing mystical, bizarre or cultish about it. Once you understand the principles, it's not complicated.

Conny - check the links Nasim has posted to YouTube :)

Nechtan - I feel this should really be reaching a larger audience too.

nmj said...

Hey Kim, Yes, 'talking therapy' just a loose description, as opposed to drug or physical therapies (the dreaded GET)! As I have not tried MT, I cannot comment in depth, and am curious about tonight's episode. Most of my treatments have been along the lines of immunotherapy. Have blogged my thoughts on MT here. I also tried Gupta, a few years ago, which is not unsimilar to MT:

http://www.velo-gubbed-legs.blogspot.com/2012/01/toxic-tiredness-part-two-bbc-alba.html

Re, youtube, I would grab it while I can, I am not sure at all on how long BBC 'lets' this kind of thing stay up!

Kim Ayres said...

Nasim - I'm really curious about how the programme is going to go tonight and what slant or conclusions it's going to draw. I have no idea how much or which bits of my own contributions will be included. As you know, you can blether on for hours, but they'll only take a few snippets.

Not heard of the Gupta Therapy, and couldn't get much of a sense of it from your comments on your blog post - sounds more like a form of CBT - using your rational mind to influence the rest of your body. If that is the case, then it is quite different to Mickel Therapy.

As for the YouTube links - I know they could disappear at any moment as various copyright things are probably being infringed. Let's just hope they don't notice for a bit longer, or turn a blind eye for a week or 2 :)

Carole said...

I enjoyed watching all the YouTube clips, although left feeling a great sadness. It seems so little is known, and it seemed terribly hopeless. Of all the interviewees, you seem to still have a sense of humor about it. (I want a crystal for under my pillow.)At any rate after watching the clips, you are even more impressive in getting the amount of living done, that you manage.

nmj said...

Hey Carole, just to say there is a *lot* of black humour in my novel (The State of Me, 2008), perhaps that did not come out in you tube clips that you saw? I have had ME since 1984, diagnosed by the Irish neurologist Prof Behan - you maybe saw him in tonight's episode. I have to say I felt part two lost its way a bit in describing what I know as ME, it just didn't get there. It felt v patchy and cobbled together tonight. I wanted to know more about the severe girl, how she got from being so ill to being able to be pregnant, I think that was pre- Mickel?

hope said...

And as soon as I get a few moments to myself, I shall watch too!

Theanne said...

I'll be interested in learning how the therapy has helped you (or not)! I need to check on what's happening here in the states as far as help for those who have these conditions...I haven't seen much about it for many years. I forget though that I was involved with caring for Don for several years...so probably missed what was going on in other peoples lives. If it has helped you or anyone else I'm for it!

Theanne said...

The broadcast is no longer available to watch...I'll try to see if I can find it somewhere!

Cusp said...

Interesting to see you on TV again last night and how you fared with MT. Be interested to know if your surge in activity and photography (residencies, open studios etc etc ) is pre or post MT because I was able to do all that and more before diagnosis and now, I could never consider it. I had to give up any 'proper' photography (ie.anything other than 'snaps') because my physical strength, stamina and brain fog would no longer allow me to consider light,location, F stops, settings etc. Lovely to see you blossoming in a new career.

nmj said...

I agree, Cusp - great, Kim, you have been able to keep yr photography going p/t - Wigtown book fest sounds like a blast! But when I saw the clips of you holding your camera up and focusing, I thought - how can you do that, are your muscles not burning?! I just cannot perform any raising of arms repeatedly w/out the burning sensation. Do you have guaranteed, albeit limited, energy that you can work around? Like Cusp, I have no guarantees, it varies constantly, and I just can't sustain any activity; a constant source of wonder that I ever managed to write my book!

word ver: pandas - I am not joking!

Carole said...

nmj - I did hear you read some passages from the book. Is it available in the U.S.?

Kim Ayres said...

Carole - I did a whole cabaret routine, complete with magician tricks and pole dancing, but they edited all that stuff out... ;)

Hope - I'd grab it while you can - I don't think it's BBC approved for being on YouTube, so could get whipped down at any moment

Theanne - yes it has helped quite significantly - I'll be writing more about it in future posts - I wanted to see what the programmes were like first. You can catch the first episode on YouTube here - http://www.youtube.com/watch?v=bB6B2BTL2zQ if you're quick.

Cusp - I've been developing the photography since I got the CFS. I was in fact trying to be a writer when it hit and it scuppered that career path. The photography actually became a wonderful outlet for me and I've built what I do around the illness, working in rhythm with my energy levels, not against. I still wouldn't attmept something like wedding photography though :)

Nasim - I was amazed tht you manage to write a book - as I replied to Cusp, I was attempting to be a writer when it hit, and the brain fog would never allow me to write anything bigger than a blog post.

I've always had a distinct rhythm to the day - all things being equal (if I hadn't overdone things the day before, for example), I've had more energy in the mornings and a lot less in the afternoons, and evening would vary. This meant I would focus on getting anything done in the mornings and write off the afternoons.

I use a tripod quite often with the photography - although less so since I started gaining some energy back. I will say, however, I have been fortunate in that I never really had the severe muscle pain that afflicts many with ME/CFS.

My own description of my condition can be summarised in my post here - What is Chronic Fatigue Syndrome?

Kim Ayres said...

Carole - I think you can download the Kindle edition in the States - http://www.amazon.com/exec/obidos/ASIN/1906321051/