A Personal Story-Sheila Barry [Online]
‘You will have heard, or you will hear, from people who are very qualified to speak here - I regard myself as an ordinary mother but then nothing is ordinary if you have an ME sufferer in the family. So why have I travelled down from York to speak at this book launch. I am here to tell you of the devastating effect the situation outlined in this book, has on the lives of ME sufferers.
Skewed clearly outlines the reasons why many of those suffering from ME feel alone, isolated and have little hope for the future.
I personally regard psychiatry as a growth industry. The number of conditions identified as mental illness has grown tremendously in recent years. MS and Parkinson's, among others, were earlier identified as psychiatric illnesses and recently I read that 'shyness' has been classified as a psychiatric condition. How do they arrive at these decisions.
Psychiatrists classify a condition when a number of them are able to agree a criteria. They have no diagnostic tests. It is simply a matter of opinion.
I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter chose to end her life.’
Frank Albrecht
franka@skipjack.bluecrab.org [Online]
‘I don't think any PWC should go to a CBT practitioner who thinks CFS is an emotional condition, or that it is not, clearly, a physical illness.’
Name: Hazel Griffiths
My experience of CBT was quite a positive one. Surprisingly, in fact, since the whole thing got off to a terrible start with the woman who assessed me; I found her incredibly patronising and closed-minded and felt she had a fixed idea of what she would find before I even set foot through the door. I had "somatisised" my symptoms i.e. I imagined they were physical but actually they were psychological.
I very nearly refused the course of ten CBT sessions I was offered, but, like many of us, I was desperate and would’ve tried just about anything.
The woman therapist, however, was very different. From the outset, when I told her my views of being labelled as having a psychological illness, she told me that she knew very little about ME (not reassuring for some people, I know, but I was very happy to hear this as I felt she would have an open mind and listen to me) and that her job was to find ways of making life easier for the patients she saw who came to her with a range of chronic conditions. In fact, I don’t think she treated me any differently than a Multiple Sclerosis patient, for example. Her view was that any chronic condition caused a wide range of problems for the sufferer, some physical, some mental and some emotional and that she would work with me to find possible ways of reducing any of these.
At the beginning of the course of treatment I kept a "diary" to help identify my patterns. This didn’t really tell me a lot that I didn’t know already, but did make me realise that I had quite a sound strategy for dealing with things rather than just the muddling through that I’d always thought I’d done. Also I had worried that I seemed sometimes to be able to "push through" [symptoms] by making myself do things, but the diary showed that I almost always paid for this later (often a couple of days later.) One of the best things about the sessions, though, was that it dealt with the anxiety I had that I was somehow making things worse for myself, or that if I could just "do it right" I’d get better.
Finally I came to realise that it was okay to find living with ME difficult and to get angry and miserable and that I was actually coping reasonably well under very difficult circumstances.
A friend of mine who is a clinical psychologist tells me that the way CBT is applied, and the quality of therapists, varies a great deal. [A big] problem seems to be the expectation of what CBT can do. CBT
cannot cure ME, or even, I’m guessing in most cases, improve symptoms; what it should be able to do though is make coping with this horrible illness a little easier.
Name: Kel
Have just finished a course of CBT with Occupational Therapists at Wareham Hospital, Dorset. Six, three hour group sessions over eight weeks (6 or 7 people in my group). It has not been suggested that the techniques we've been given constitute a cure. Merely that they will make it easier to cope with the illness and put us in the optimum position for recovery. I've been diagnosed very quickly, so theoretically I'm in a good position to make a recovery.
Name: Fox
It seems to help a little bit for your emotional well-being, but it doesn't help to get rid of even one of the many physical symptoms of ME-CFIDS-CFS
Name: Erik* Country: Switzerland
I am writing in behalf of my son (16), ill since december 2003 (almost 18 months now), just got a week ago a diagnosis from a brave pediatrician, not yet acquainted very much with ME/CFS and ready to read through all this documentations (canadian guidelines, etc. etc.). My son still being in danger of being harassed by schooldirector and child protection authorities and psychiatric clinic.
Was recommended a GET and behavioural therapy by the chief of a departement of children hospital. My son is homebound ever since he got november last a yeast treatment from a doctor (Perenterol), as of his most serious additional belly problems.
He does not think at all that this form of therapy will help him at all, as he sees already without this how little it takes to overexert himself (eg. the visit at home of a kind doctor), he does suffer serious post exertional malaise and eating is getting always a problem.
I am writing you from Switzerland, where just a short time ago a professor published in the swiss medical weekly an article saying that cfs/me is a psychiatric disorder and closely relied to fear traumata, fear denial, depression and other crap.
I do know after seeing the condition and the changes therein for such a long time now and after running from doctor to doctor first, that the medical personal are to a big extent a very strange kind. (I am really so sorry to say!)
My son would state here that you also could treat a broken leg with psychiatry if you would not know better. And that never a doctor would get the idea to send somebody with a broken leg on a marathon; something which seems to him would be a good comparision of what was asked of him sometimes!
He just was not taken serious till we were lucky to find this pediatrician now. And what my son does not know, the authorities are still seeming to go on... I really hope they will understand!!!
Name: 3times* [Online]
[CFS] is not in our head so, in my opinion , changing one's behaviour is like washing your car when your engine has a mechanical problem; It makes you feel good but it does not fix the problem at all.
I admit therapy can help you with self-confidence, relationships and such things but it does not mend broken bones or does not cure cancer no more than it can cure CFS. And it can even add to the frustration to have one more professional tell you it must be in your head - in other word you are causing the [CFS]...
The money spent for years of therapy is about the same as the price of a brand new car...Neither is a cure for CFS, but I think the car would have been a better choice for me ;-)
Name: mrlj*[Online]
I had been in therapy for three years when CFIDS was diagnosed. CBT was great for other living situations, but was about as useful for CFIDS as insulin for a broken bone. The treatment needs to fit the disease.
Name: karinya [Online]
I undertook Cognitive Behaviour Therapy soon after I was diagnosed and it was extremely beneficial in those early stages of coming to terms with all the implications of the diagnosis. I was extremely lucky to fluke a therapist whose sister also suffered from CFS, so my therapist was very much in tune with CFS and its effects, which made a big difference I think. CBT is also very beneficial for life in general and I am very glad I did it. Some of the good habits established wear off a bit in time, so it is probably a good idea to do a couple of refresher sessions occasionally also. It won't cure your CFS but it will help enormously with your ability to cope and to make the best of where you're at.
Name: B.H. Country: UK (from letters to RiME)
This treatment [CBT] has been the only one offered by our GP and was not successful. Subsequently our GP practice has largely ignored us.
Name: Annabel* Country: Australia
[On a recent trip to hospital and what the ‘psychatric approach’ can mean for M.E. sufferers]
Being in the hospital was an absolute *disaster*, with everybody there thinking I was making it up, somatizing, etc. They set the psych team on me. They refused to feed or wash me, saying that if I really *wanted* food or to be clean that I would magically recover sufficiently to manage these things myself.
At one point, a gang of about six of them came in and announced I was going to sit up. When I pointed out that it made my heart rate and blood pressure go cuckoo, they pointed out their opinion was that lying down *caused* these diseases (which I know to be false). So I was forcibly sat up against my will, and then they left me with the head of the bed vertically up and no way to lie down or move, with no nurse's bell or way to call for help, while I was dry retching and crying and dizzy and begging them to let me lie down.
They did that twice, that I recall, leaving me there helplessly and obviously very ill until so me random passer-by happened to take pity on my and put the bed flat down again!
They also frequently told me I needed more "light and air and socialization" and to this end, they moved me from the nice quiet single room I had been put in to a 4-bed ward which was the noisiest I have ever been in, with bright sun and no curtains, and then objected violently to my very necessary eye-shade and earplugs.
I had been warned this hospital had a weird attitude to CFS patients but I had no idea it could be THAT bad! I eventually gave up and couldn't take what I perceived as intentional torture anymore and begged them to let me go home, which they did yesterday.
So now I am home again, with no prospects for a future that I can see.
I am frightened.
After discussion with the advocate my current plan is to go and see a reputable CFS-specializing doctor who I have wanted to see for ages anyway. He should be able to provide me (yet again) with a bunch of tests that show *physical* evidence of my disabilities and hopefully this will help my advocate to get better treatment for me - she thinks it will, anyway.
Only catch: The INITAL two visits to the doctor total $500 which must be paid $300 at the initial visit and $200 at the second visit, and the total medicare rebate across both comes to only $150.
[This occurred in May 2005, Annabel tells me that this abusive hospital trip caused her already very severe condition to worsen considerably. It is now one year and 3 months after this event, and she has still not physically recovered from this hospital visit even slightly and she remains as ill now as she was when she first left, if not worse in many ways.]
