Just to let any PWMEs out there know, Radio 4's 'You & Yours' is having a week long feature on M.E. starting on Monday. Well actually it started today but I didn't know until after the broadcast. However, there is a Listen Again feature.
There's also a very interesting debate going on on the BBC Discussion Board
However, don't get you hopes up too high because today they had an interview with David Puttnam who reckons he has M.E. He has given similar interviews in the past, including one for The Guardian last year. If you listen to his description of symptoms you'll soon realize that he almost certainly does not have M.E.
All the same at least the thread of features in next week's programmes will highlight the condition and may get people thinking
9 comments:
Hi Cusp,
I read the links. When you say that he doesn't have ME why is that? Is it because his tiredness comes and goes in short irregular bouts? I think he said for 3-4 days at a time 8 or 9 times a year?
I'd appreciate knowing.
Hi Kahless. Thanks for your interest.
Well the reason I (and several other people on the discussion board) suggest he doesn't have M.E. is that M.E. just doesn't come and go like that.
It's true the condition fluctuates and you have good and bad days (doesn't everyone ?) and, over a long period of time there can even be phases where you are more able and then very unable (i.e. bed bound). In the 30 odd years since I've had it I have had spells where I've kind of managed a normal life though I never felt well and everything was an effort. At other points I've been in bed unable to walk, balance, hear or see properly and unable to bear noise, light etc etc. Such 'phases' can last for weeks, months, years.
Putnam says he has bad patches of 3-4 days which implies he has other times when he feels reasonable well. For PWME their 'bad patches just go on and on. The misery is unending and every day is filled with effort -- nt just a few days of the month.
Certainly, for someone with a high profile career and a lot of travelling he must feel reasonably well --- well enough anyway.
For people with M.E. --even those with moderate M.E.---the idea of travelling to another country on a plane and then needing a day to get over it is unthinkable. PWME just couldn't do it. I have real problems just going 10 miles up the road on my best days and afterwards I really pay for it --- a day in bed, maybe two.
I think DP had a virus of some sorts which laid him low and which intermittently rears its head. He also says that the has lived with depression for years.
I am most certainly not denigrating his problems but if he really had M.E. he just wouldn't be able to do what he does. No amount of positive thinking, will power etc etc can overcome this 'bastard illness' as Signs calls it. If it were so, believe me, I'd still have a job in the Arts managing big budgets, travelling all over the place(even though I felt unwell)instead of sitting here.
Hi Cusp.
The reason I asked and something that I never mentioned before, was for a few years in the 80's my mother said she had ME. I would put her in the Putnam bracket. She would have periods when she would just go to bed for days and ignore us. Then she would get up and be fine.
Thanks for answering my question.
I know that David Puttman has frustrated you cusp, but even if his illness isn't 'real' the point that radio 4 is dedicating time to it has to be a good thing as there are still so many Docs who don't get it.
And any publicity and all that.
Not comparable but along the same lines it's like CBT being compared to counselling and seen as good, which frustrates the hell out of me.
pxx
Hi again Kahless.
Well it may be that your Mum had chronic fatigue (which isn't the same as chronic fatigue syndrome (CFS) or M.E.) but she may well have been genuinely unwell and in need of a few days rest. I don't know. All the same, if it was real M.E. then a few days rest now and then woudn't mean she was up and running as normal afterwards.
Hi Pixie. Thanks for dropping by. Yeah, I agree it is good that the whole business is being highlighted. I don't want to 'dis' DP. I'm sure he is unwell and has genuine bouts of illness and high temperatures and depression and all the rest of it. It's just that for him to be rolled out again as a 'Celebrity PWME' will just confuse everyone because it leads the layman to think that PWME can have a short period in bed or resting and then pick up there lives where they left off --whether that's as a world class film producer or a dustman ---- and it just ain't like that.
I think the CBT/Counselling comparison isn't so far off in some ways and, as you know CBT is supposed to be one of the cure-alls for M.E. as prescribed by the latest NICE guidelines --- Hogwash! It might enable some people to cope with their condition more effectivley but it won't cure M.E. and it's very doubtful that it will get you to a point where you could resume former levels of activity.
CBT is great for some areas where there are ingrained patterns of behaviour which interfere with everyday living but it'll never deal with more complex aspects of emotional imbalance or mental illness. It certainly won't deal with a neurologial condition.
These things need saying, Cusp and I'm glad that you are doing it. Someone came up to me recently at a poetry event and said she had been getting tired a lot and thought she probably had M.E. Sometimes I am too sodding weary to even begin to discuss it or explain - again - how it really is. But one ought to if one can - so people really get the picture.
I'm sick of talking about it.
But:
I'm sick of not talking about it.
Know what I mean?
Oh my dear I SO know what you're talking about.
This post was meant to just flag up the fact that ME was on the radio --- 'end of' --- but in the end I've ended up spouting on and on and I'm more than happy to do so in some ways in order to spread knowledge but it's so hard to escape from this troll that follows you around isn't it ?
I've gone from hiding it completely and pretending I'm well, to telling people I have ME and a bit about it, to just saying 'Oh fine' when people ask how I am. What more can you say ? They don't (generally) really want to know because they've got their own troubles.
I guess the whole business is just a process as they say. Personally I wish the blasted thing would process (as in 'procession') out of my life and let me get on but that's not going to happen and in the meantime the DWP are in cahoots with the insurance industry and they'rein cahots with the psychs and sometimes it feels like everyone's making something out of this (money, ego, career) except the likes of me and thee.
Oh poo !!!!!
hey cusp, i also heard david puttnam, and he certainly didn't describe the illness you and i have. he also seems to think epstein-barr is M.E, which, of course, it isn't, it is the virus which causes glandular fever. his main symptom these days seems to be depression. he has obviously suffered - and suffers - but he doesn't have M.E.
I couldn't bring myself to listen to any of the stuff this week. I just can't risk hearing misguided or inaccurate or downright depressing stuff as I'm a bit fragile at the mo.
Interesting link on Amazon.co.uk - a book called Cognitive Behavioural Therapy for Chronic Fatigue Syndrome: A Guide For Clinicians. You should see what else they bought. There's now a 'CFS For Dummies' book and doctors also plumped for a book on treating Somatization. Which all adds up to them still thinking it's a psychological disorder. Cusp, I'm impressed you've been able to tackle issues concerning You and Yours and coverage and perceptions. I just feel low looking at book listings on Amazon.
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