| Name: Andrew Porter Country: UK [Online]
The use of CBT, also known as Reverse Therapy in the UK, was to increase my level of physical exercise, and reduce the amount of sleep I had. Sadly, this caused all my symptoms to intensify, hence I became depressed through feeling so ill. Consequently, I had to be treated for depression after giving up the CBT protocol.
The use of CBT in the UK is dominant in dealing with M.E. as psychiatric medicine dominates. Sadly, psychiatry dominates in the UK, especially as it makes it a lot cheaper for the National Health Service to remove patients from what would otherwise be difficult and expensive investigations and treatments.
Name: Adenton
It made the condition far worse.
Name: Patti
Despite about 8 attempts over 5 years, graded exercise hasn't ever worked for me. At one point, it did help me regain a little muscle strength and make me feel better about my body. I always stretched before exercising, began at 2 minutes on the treadmill, or 1 rep at whatever machine, rested between and worked up VERY slowly (adding a minute every 2 weeks). I was only ever able to get to 12 minutes walking on the treadmill without crashing. The first few tries, I kept at it, resting up after the crash and doggedly starting all over again.
But I found that I feel worse overall when I exercise than when I don't, so now I stick to stretching and an occasional tai chi workout on tape for elderly people. Side effects of graded exercise were excruciating. It was difficult at best, and the longer I kept at it, the worse I felt.
From the 25% Group, by an anonymous sufferer:
‘Governments, researchers and the medical profession in general need to realise that it is not just about saving lives but quality of life and that with severe ME, this quality is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years; sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it’s got to get better soon even after years of disappointments.
Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when I received 25% burns but with ME this form of "treatment" only results in deterioration rather than increasing your capacity! If only that was the answer I’d never have been in this hell. I’d have been well years ago enjoying the wonderful life I led before ME.’
Comments from Greg Crowhurst of the 25% M.E. Group to the Gibson Enquiry; December 2005
A sufferer recounts the often horrifying impact of this "treatment" [CBT and GET] regime on those with severe ME:
"All of my ‘help’ is useless:
I am offered anti-depressants (I am not depressed)
I am offered ‘Behavioural Therapy’ (I have no incorrect illness beliefs).
I am offered ‘Graded Exercise’ (Which even in small moderation, relapses me).
EVEN WHEN I DO THESE ALL AGAINST MY WILL. As an inpatient in Hospital, my medical records are falsified, and it claims I am ‘obstructive’ to my own recovery, as these psychosomatic principles have no effect on me. This is then claimed to be MY fault, not the fact that I am not mentally ill, and therefore do not ‘recover’ from M.E via mental illness interventions".
The same sufferer goes on to tell how:
"I was refused medical drugs for chest pain and orthostatic intolerance (a feature of M.E) unless I agreed to be LOCKED in a mental institution in LONDON (National Hospital For Neurology & Neurosurgery) Summer 2004.
I participated in ALL activities I was asked to do, despite being mostly bed-bound.
I was not given food, and had to resort to hiding food in bags, and urinating in water bottles and hiding them under the bed (as I was refused to be pushed to the toilet).
Despite this treatment, I continued my ‘Behavioural Therapy’ at this Hospital and did everything they asked. On reading my medical records, it stated ‘had not engaged with the treatment protocol, and ‘self-discharged’. All lies and fabrication of the truth
This is what ‘Behavioural Therapy’ is for an M.E patient in 2004 in the NHS".
From the 25% Group, A carer's story by Greg Crowhurst (Commenting on the MRC report.)
I have got about an hour. It’s an early Thursday morning and a world away people are going to work, grabbing breakfast, starting a new day. My wife Linda is asleep. In about an hour I will do my best to help ease her agony. For if the last eleven years are anything to go by she will awaken in a darkened room paralysed and totally in pain. Her face will be drawn and palsied down the left side. She will shake and gasp in awful thirst. Very gently, in whispers - for any noise is devastating, I will try to help her. I will probably get it wrong because even now, after eleven years of it, I don’t really understand the full extent of her suffering; how even the softest, most loving touch hurts.
Did I say eleven years? That’s a lot of mornings. That’s a lot of time with no treatment, no relief. That’s a big chunk out of a career. That’s a quite a bit of time surviving on benefits, living in isolation, fighting for just to be acknowledged for God’s sake. Somewhere out there a whole bunch of psychiatrists are probably climbing into their BMW Series 5’s as they too begin this new day. Me and Linda, we’ve spent the last eleven years surviving; because that’s the best you can do with Severe ME at the moment.
Professor This and That meanwhile have spent the time building a nice little career thank you very much, cheekily suggesting that if only people like Linda could change their beliefs that they are ill, then.....I am searching for an analogy here, you know when you can’t get rid of a particularly annoying pest; something loathsome that crawls out of woodwork ... I don’t know, but I hope you get the picture, for that is how this carer - and I suspect I’m not the only one, views the Cognitive Behaviour boys. It wouldn’t be so bad if they’d just gracefully admit "it’s a fair cop guv!" Okay you’ve done alright on the back of the likes of Linda with your mad ideas and theories, now just go away and leave us alone ! Will they heck!! Those blighters have only gone and grabbed for themselves £11 million quid. Eleven million pounds of our money!! £2.5 million for the Mighty Rich Con (Medical Research Council) scam and the rest for a hoary horde of psychiatrists to staff those ME treatment centres. If you and I had eleven million pounds, I wonder what we’d spend it on:
It wouldn’t be our first thought to spend it on someone to come out and put our loved one through their paces with 90 minutes of Graded Exercise "Therapy".· It just wouldn’t occur to us to send for a psychiatrist anymore than we’d expect a shrink to turn up and ask us if we’re sure, if we’ve broken down by the side of the road.
We would say "you’re having a laugh" if a man in white coat asked us to spend £2.5 million on a Missed Real Chance; that specifically excludes those suffering from ME !You and I , we wouldn’t waste time faffing around. We have the overwhelming evidence of our own eyes to go on.
We’d blinking do something so revolutionary it would be shocking. We’d spend a penny on physical research. And another and another.....we’d make some progress wouldn’t we ?
Controversially it might just be worth our while funding a CBT - Cut-out the Bollocks Therapy for those deluded behaviourists to attend, while the rest of the world wakes up. Ah well, More Rubbish and Confusion. Another day wasted.
Name: Mark* Country: UK
I became ill in February 1993, just a few days after receiving a tetanus booster. The original diagnosis (no one noticed the tetanus booster at the time, or if they did, they didn't mention it - and no one's mentioned it since) was "acute stress". To this was later added "anxiety" and "depression".
My GP recommended I take longer and longer walks every day. This I did - until I literally dropped. After a very worrying struggle to get home again I realised this was not such a good idea. I kept trying to exercise, however, and it made me worse and worse, till it got to the point where I had no choice in the matter any more: I was bedridden most of the time. When I *was* able to go out, I couldn't do so without using a walking stick.
I also received a series of counselling sessions. The relaxation and visualisation exercises were fine, but the attempts at juggling disorientated and exhausted me. I never did learn.
In 1995 I was persuaded that I should stop using my walking stick and "think positively" and not "buy into" my condition. I struggled for about two months, but eventually had to go back to using the stick, as not only was my balance dangerously bad, but also the sheer physical strain of trying to walk unaided was making me worse generally.
That year I also followed a course of CBT. It did help me come to terms with the fact that I might never be well enough to work again (not a joyous realisation at the age of 40) and helped me cope with my handicaps, but I also eventually noticed that I was overdoing things physically - because I was trying to ignore my limitations, of course. To me, that is the worst danger of CBT when it comes to illnesses like M.E.
A couple of years later I managed to get a prescription from my GP which allowed me to have a discount when paying for a block booking of sessions at the local Fitness Centre. The first stage of the regime was using a treadmill and exercise bike. Total disaster. I had to give up, it was making me so bad. (I lost my money, including what I paid for the compulsory trainers, which were no use to me otherwise!)
The routines I have been taught over the years by physiotherapists (who were cognisant with the effects of M.E.) have been useful - but these involve very gentle exercises and stretching - nothing like Graded Exercise.
I know from hard experience how damaging pushing oneself both mentally and physically can be. I still overdo things, because, when I'm "well" enough, I keep trying. I still hope that eventually it will help, but after 12 years, common sense tells me that this is wishful thinking.
Name: Annette
I tried a weekly water exercise class starting at 15 minutes. The chemicals in the pool made me violently ill (nausea and vomiting) and the exercise made my ME symptoms worse. The muscle pain, weakness, sore throat/glands grew every week and although I stopped and started at an easier level it was impossible to continue.
I find the sea a better option but I am too weak to do this safely without help.
Name: SG Country: Australia
When I was severely ill, and when I am in relapse mode, I can do little more than move from the bed to the couch. But on days when I can, I have to do some exercise, very carefully being aware of the signals that tell me to stop.
Interestingly, I've found that the type of exercise I can do is extremely limited. I can walk slowly for a varying length of time with rest breaks, and I can swim slowly. I've also tried yoga and pilates, but both send me into relapse.
Name: Rose* Country: Australia
Many years ago, when I was only moderately ill with ME/CFS I tried a series of graded exercise therapy at a highly regarded private hospital down here.
The first time I was inpatient for 4 weeks and then an outpatient for about 6 months. This occurred directly after a long series of debilitating infections had finished, and I did indeed appear to get somewhat better. At the time I was very excited and positive about it all and thrilled at what seemed like it could be the start of getting my life back. I gave it all I had and the practitioners were supportive and helpful most of the time.
Unfortunately, after that first success I kept sliding back down the slippery ME/CFS slope to illness and four further attempts gave me ZERO further relief.
My personal theory is that I was debilitated after the infections to a greater degree that the ME/CFS was acting, and it was this short-term weakness that I overcame with the GET. Certainly when I tried again and again afterwards, working just as hard and with just as much enthusiasm (after all - it had seemed to work the first time!), nothing at all happened.
Actually, after it became obvious that I *wasn't* improving on subsequent visits the staff at the facility got quite nasty, telling me I needed to have "a good hard think about my motivation" and similar idiotic bull**** implying and flat-out stating that I wasn't trying hard enough, basically.
Name: Nanaloo
I have walked for years and continue to try to walk now but the side effects are not worth it at this point. Hopefully, someday, I can enjoy it again.
Name: [Name supplied] [Online]
I am writing to tell you what 1 know about Dr Trudie Chalder. She was consulted about the treatment of my son whilst he was in hospital. My son, who is 20 now, was admitted to a hospital in the District for rehabilitation with his ME. He was severely affected and bedbound and unable to care for himself. Since his discharge I have obtained the medical records and I can see that the consultant in charge wrote to Dr Simon Wessely for advice. I presume he referred the request to his colleague Dr Chalder. On my son's hospital file is a document, dated 07-03-01, a ‘Draft Action Plan Proposal following consultation with Trudie Chalder’ which I attach. I find the action plan shocking, and I was particularly disturbed by the penultimate paragraph which states:
"We expect (name) to protest as well as the activity causing him a lot of pain. This may result in screams. .. . it may feel punitive. "
What I witnessed in the hospital was certainly punitive and I often saw him handled roughly and his skin marked.
This plan has never been discussed with me. I was unaware of it's existence, in fact when I spoke to the consultant asking where he was getting his advice about treatment for ME he refused to tell me. I never gave my consent to this action plan.
There was a parental meeting about physiotherapy being painful, and I was specifically asked whether I consented to this. At the time I understood the question to concern normal physiotherapy, and did not realise that I was being asked to consent to a painful psychological action plan, in the file is a note by the physiotherapist stating that pushing into my son's contracted hamstring would cause pain. He was told "that is the point".
I believe this explains why my son was never offered pain relief; and although 1 asked for it several times I received no response, There were a number of painful incidents; he was found bleeding from the stomach in February 2001 and duodenal ulcers were detected in September 2001. He also had surgery in September 2001.
On 18 April 2001 I wrote to the consultant about the pain my son must experience in having a naso-gastric tube frequently inserted. I reported that it had been reinserted 11 times in the previous 7 weeks and asked if steps could he taken to avoid the frequency of such an invasive procedure. 1 have no record of receiving a reply.
The Action Plan also accounts far the diagnosis of "elective mutism" which was then applied to my son. This in itself has caused him great harm both before and after his discharge as everyone treats him as though he is refusing to speak. Community speech therapists have refused to work with him on the basis that he might "not be compliant or not in the mood". After three referrals one did visit him once but she appeared to have been warned by her medical director not to put anything in writing, for fear of challenging that diagnosis.
During his time in hospital all the other young people on the ward were continually told that my son could speak, and could move, but was choosing not to. They would frequently ask me why he chose not to speak. The nurses would say, "It's a lovely day, what a pity you're not out there", as though he could be if he wished. Day after day he was treated this way.
He was admitted to the hospital on 14 December 2000, initially for a three-month assessment. At the family meeting on 25 January 2001 it was stated that the final review would be on March 15 2001 and if there was no progress towards free communication a discharge plan would be agreed with the family. My son's lack of speech was clearly seen as the most serious of his disabilities.
In the file is the occupational therapy review dated 15 March 2001 recommending, "Team to debate the approach following recent consultation with ME specialist", which I presume refers to Dr Chalder. The occupational therapist then appeared to take on the role as lead therapist. There is a record of a confidential meeting on 31 May 2001, which agreed to continue with the behaviour programme. It states that, "The Chronic Fatigue Service believe that this (exercise programme) is not to prevent contractures as (name) is moving and being moved enough to otherwise prevent this, but to pursue exercise to the point where he resists." The service referred to above is the one at Kings College Hospital.
At a team meeting on 28 June 2001 a provisional discharge date was set for August. In the event he was not discharged until 10 January 2002.
Until discharge the behaviour programme continued to be increased and I attempted to resist this. I wrote to the consultant and eventually complained that it was too much for my son. The response was to increase the programme further. The consultant stopped speaking to me on the unit. I then discovered that he had behaved unprofessionally because in a referral letter he stated my son was suffering from "pervasive refusal syndrome", which had never been said to me. I then realised I had been completely left out of the loop identifying my son's illness and his treatment, l complained to the Chief Executive of the hospital Trust. An investigation was promised but this never happened.
The hospital did not want to discharge my son home. They tried to refer him to two brain damage units who would not accept him, as they were not appropriate referrals. Finally a letter was written to the consultant from the House of Lords, urging him to allow my son home. Coincidentally he was discharged home soon after.
The issue of my son's consent is frequently referred to in the notes, and it is clear throughout that they did not have his consent.
This unfortunate history is a case study of what can happen when diagnosis and treatment are not discussed with the patient and his family. There was no consent to the "treatment" which caused pain and suffering. I believe that the action plan had the effect of making staff who carried it out indifferent to my son's pain and safety. He was treated with less and less respect the longer he was on the unit, not least because he failed to respond. The longer this went on the harder they tried to make him respond. By the end he was not being treated with any respect. I believe therefore that the action plan devised by Trudie Chalder was harmful and posed unacceptable risks.
There was no appraisal of evidence as to whether or not the programme was working. It is not in dispute that my son made no improvement at all during the 12 months spent in that hospital I believe Dr Chalder has stated that
" parents... hold physical illness attributions resulting in them searching for a specific physical cause"
The implication is that to do so is both unhelpful and wrong. She must be asked to what she attributes the illness.
The approach of Dr Chalder and the Chronic Fatigue Service is diverging from Department of Health policies, like the expert patient programme, and the Report of the CFS/ME Working Group to the chief medical officer, which recommended that management should be undertaken in partnership with the patient, and should be applied flexibly in the light of their clinical course. Please note that she resigned early from the working group, as she did not agree with the findings.
An action plan, such as the one attached, is not respectful of the patient, could not be discussed with the patient, or carried out in partnership. It is not good practice to cause patients "a lot of pain", I question whether it is ethical, indeed it may be unlawful.
May I draw your attention to the controversy raging at which Dr Chalder is at the heart. She and colleagues published an article in the BMJ in September 2003, "Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds". This has been followed by a stream of incandescent correspondence. (bmj.bmjjournals.com/cgi/eletters/327/7416/654#36770).
Articles in the press, such as the recent one in the Times "Chronic Fatigue Syndrome : Tired or emotional?" September 27 2003, echo the row going an in the field, Dr Chalder's position is extreme and I hope the Department of Health will consider carefully whether it wishes the Chronic Fatigue Service, of which Dr Chalder is a member, to have any role in proposals for new services for patients with ME.
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