I just had a few emails with some interesting comments. In the video on 6.7.2008 Jodi said something like:
"For the benefit of all those millions of people with M.E., the bogus disease category of CFS must be completely abandoned."
Now this obviously sparkled some debate. But if you think about it, it is true thanks to psychiatric trivialisation and denial.
You see, CFS is defined by the Oxford criteria, tiredness only, the CDC or Fukuda ones with tiredness and 4 other symptoms out of a list of 8 and the NICE ones with tiredness and a headache or sore throat.
So in that mix you will find patients with physical illnesses but also patients with mental health problems like depression and burn out.
And I must say, after a few years in bed, with in my case ME, I wish I had a depression or burn out. I know those are not NICE once either etc, but at least for many of those problems we can actually do something and cure them.
Yet in the case of physical CFS and ME we can only offer a therapy which is as effective as watching paint dry, better known as CBT.
Even psychotherapists are now attacking CBT when used for depression:
“The belief that cognitive behaviour therapy is the most effective way of treating depression is wrong, claim leading psychotherapists.” By: Jeremy Laurance, Health Editor, The Independent on Tuesday, 8 July 2008
The other part of one of the comments I liked was:
My partner just popped into the bedroom and said:
"I don't know why you are getting so upset and making yourself ill. Who gives a flying f**k what some doctor says in a blog? "
Please tell your partner it is not a flying f**k but a flying FUKUDA. And furthermore it is important to give a FUKUDA because as we all know there are not that many docs who actually know that these illnesses are debilitating etc.
So thanks for your comments.
Oh and one more thing, I don’t moderate comments, I just block spam. So sometimes it takes a while before the comments reach me or my brain or internet provider is not up to logging on.
And the last thing, thanks Jill for your splendid comment, much appreciated, if I could walk I would frame it and put it on my wall !!!!!!
I am not sure what Dr Fukuda has to do with the manufacturer of Sports Equipment of the same name, but googling "Fukuda CFS" gave some interesting references to read :-)
ReplyDeleteI recall a Myhill comment along the lines "CFS and ME sufferers are frustrated and depressed because they want to rejoin the world and have a normal life but are prevented in doing so by there illness. The clinically depressed seek to retreat from the world". If a psychiatrist can't differential between these two cases, then they can't be very good at their job can they? Personally, I have a lots more faith in peer reviewed research supported by double-blind trials etc., than a bunch of turkeys voting against Christmas.
As someone who has been bed-ridden for months and has at times been worried about wetting the bed simply through lack of energy to get to the toilet and back to bed, I can testify that there is a world of difference between chronic fatigue and that “I just feel I am at 80%” sort of feeling.
It’s a pity that you didn’t include a direct reference to Jodi Bassett and the www.ahummingbirdsguide.com site. My heart went out to some of her writing and it helped put her bald statements in context. I disagree that CFS should be banned, if for nothing else it’s a useful tag to search the internet for information that our GPs cannot give. One of the points she makes is that whereas the long-term prognosis for CFS is generally positive, improving if not full recovery, in the case of the ME cluster the prognosis is progressive. Certainly over the last six months I have seen a slow and stepped improving trend, so I am content to be labelled as a CFS sufferer.