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, just as happened with Multiple Sclerosis and even Asthma. 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: 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.
I had 6 sessions of CBT, at the time I was severely affected by ME/CFS had difficulty walking and standing for any length of time. My local support group (Susssex ME/CFS Society) heavily promoted CBT as the answer to all our problems. I had to pay privately to see a psychologist £45 per hr and had to travel 25 miles each way. The journey was the worst part.
On the first visit the psychologist claimed he could put me right in about 6 sessions - he gave me false hope. By the end of the third session I was no better and was starting to the notice that the same ground was being covered in each session, we were going round in circles and getting nowhere.
By the final session we had both come to the conclusion that CBT wasn't going to make any difference, my psychologist decided it wasn't what I needed after all - shame it took nearly £300 to reach that conclusion. Interesting nearly every Dr I have seen since being ill isn't a great believer in CBT for CFS - so I don’t really understand why it is pushed so much.
Name: Clytie Country: Australia
CBT can be of enormous help to anyone suffering a long-term and profoundly disabling illness like ME/CFS. However, it's important to understand up front what it can't do. It can't change the physical realities in any way. The illness remains the same.
My psychologist expected me to concentrate on talking to her for an hour after a long car journey. (I need to lie down for most of the day.) She clearly had no knowledge of M.E. (C.F.S.), & set me totally unrealistic tasks, then became cross because I hadn't done them. She told me that the pain didn't matter, it wouldn't harm me to complete her set tasks. It struck me that the money she was being paid (by the British national health) could have been much better spent on something helpful.
Name: Julia Country: UK
I had 10 (I think) sessions of CBT at Barts hospital a couple of years ago and am responding to your request for experiences of this. I had had ME nearly 15 years when I started the CBT, and felt strong enough mentally in myself to deal with any 'brain-washing' type stuff that might have come my way, and in fact there wasn’t really any of that. I took up the offer of CBT partly to see what all the controversy was about and I have to say I did not find it a bad experience, but rather irrelevant.
My CBT counsellor was a pleasant woman, and we spent quite a lot of the time talking about the very recent ending of my long-term relationship. Although I ended the relationship and so was not completely devastated, there were issues to clear up, and as my ex-partner was black and so was my counsellor, I found her perspective interesting. She did do some sort of psychological tests on me, but pronounced me 'normal' and then seemed not really to know quite what to do with me.
I can't say I got nothing out of the sessions, but what I got was very minimal and certainly did not improve my ME - which anyway I didn’t expect it would. Oftentimes any sense of support from the sessions was cancelled out by the exertion required to get to the hospital, of course! However, there was a small positive spin-off I think in that I was able to educate the counsellor about ME, recommending 'Stricken' and 'Shattered' for her to read. She was open-minded enough to respond positively, but unfortunately was only on a temporary contract, so if her perspective was changed by the reading it probably wont do PWME much good.
Good mental health is best for everyone including doctors and therapists. The problem with this particular therapy is that the premise doesn't work with organic disease since the assumption is that if you change your thinking you change what is happening to you. The problem is that you cannot think your way out of any organic disease, not even the heartbreak of psoriasis.
Attitude changes can work wonders for most of us, not just our teenagers, but it doesn't cure biological disease. There are many much less expensive therapies that are a great deal more effective in helping people to cope with this devastating illness.
I was made to try cbt by my doctor who referred me to a clinic who apparently "specialised" in cfs and cbt. I didn't like the course because it was set around the idea of having 4 thirty minute rest breaks everyday for the rest of your life (that's what the course I went on was anyway). I couldn't see how that was supposed to improve my life in any way. I’m unable to work with my current symptoms, but if having these rest breaks, even if my symptoms improved, no employer is going to want someone who has to have 4 thirty minute rest breaks at the same times everyday no matter what. So I would be in a no better situation.
I also couldn't cope with the idea that the illness was caused by overactivity as it was described in the group sessions I went to. This seems to blame the ill person for causing the illness and I don't agree with that. None the less I tried to stick with the program but found it impossible. It’s impossible to be able to take a break at the exact same time everyday, four times a day, there are too many variables to everyday life. Such as if someone visits, or there's an emergency or if you have a child or anything. No healthy person needs this, neither do those with cfs, it just adds stress and removes hope indirectly by placing blame. I would not recommend it.
Name: Richard Country: UK
A parent's view - When my eldest daughter was finally diagnosed with ME (after 3 months of doubts and tests) we were given an appointment for what was planned to be the first of many CBT sessions.
I took my daughter along and we listened and the woman stared taking notes of my daughter's history - where she was born, what she did, what she liked, what her grandmother's name was, her grandfather etc. and started saying that she was looking also for any trauma which might have occurred. I listened and kept reasonably quiet, as I wanted my daughter (then 13) to explain.
This woman then asked to speak to my daughter alone.
We came away with a feeling that this was going nowhere.
I had already examined, with my wife, all of the past and tried to see what might have caused it, was there anything that had happened, or was happening, which might affect her health.
I look back now in amazement that I even countenanced any such session for what was and is a biological illness. But, and this is something I sometimes forget, I was a new parent of an young ME sufferer and I was going with what the hospital suggested - just following through and probably still dazed by all of this.
We didn't know about ME and we were looking for anything to help.
After coming away from that first meeting we discussed with my daughter we both agreed this was not what was needed. Apart from the exhaustion she experienced in travelling there and back she felt it achieved nothing.
After all, any person with a modicum of common sense is going to analyse the situation and look for possible causes and then methods on how to deal with it. We don't need another acronym to help cope. We can do that ourselves.
We didn't repeat that experience. It was totally useless from our point of view and I had doubts on the skills or qualifications of the person giving this.
Isn't it coincidental that when they ask for 'volunteers' for money-wasters such as the PACE trials in the UK the people they want are 'new ME patients'? I.e those who have so little knowledge about ME and are probably still reeling from the sudden and devastating onset of a strange illness.
The psychiatrists really know something about manipulation.
Name: Owen* Country: UK
Firstly, It took 8 months to be diagnosed with ME/CFS. I was given counselling which I could barely attend and spent some of my sessions lying on the carpet of the psychologists floor. I had lots of blood tests etc. I was told that people with depression have high cortisol levels, that’s funny I said, I barely have any. Anyway I had to attend just to get some sick pay from work. I was then reffered to Manchester and diagnosed with CFS, since then I have since I private doctor who says I have ME, not CFS, bloody confusing. Anyway I was given no decent advice and told I needed CBT/GET. I attended therapy and was told there was no way I could do GET. I had CBT instead, but it made me worse or no improvement, as I could barely speak. I consider CBT a waste of time for the patient and a waste of money for the NHS. It has not helped me/made me worse. I am bed bound/housebound under care of parents at 32 years old.
I would also like to say that on my health forms for insurance industry it was written anxiety/depression were objective symptoms chronic fatigue syndrome. Work that one out.
CBT/GET for ME patients is like giving psychological therapy to a cancer patient before they have had chemo.
Would it not be more appropriate to spend more money on providing care and medications to help recovery and then once better engage patient in neuropsychological therapy.
The fact that people with CFS are referred for CBT, or any other kind of psychotherapy, as a treatment for their CFS makes as much sense as referring a diabetic. Yes, your way of thinking toward your illness can change, but I think the foremost reason people with CFS are referred for psychotherapy is the belief that it's all in the patient's head.
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".
Name: A mother of a child with M.E. (name withheld) Country: Australia [Online]
‘My daughter developed kidney cancer at age 9. It was a very large cancer, very sudden. We were so shocked, the whole family. But we had a great deal of support, a whole support network, medical staff knowing exactly what was happening and helping us to understand, free accommodation and transport in the city (we are country people), and the support for my daughter herself was constant and so important: lots of positive support and friendliness from medical staff, whole areas set up for cancer kids, to make the experience less horrific, special school provisions, from the beginning we had all the support we could possibly need. And that made all the difference.
Although we were still shocked and desperately worried, and it was a ghastly time, it was so much less of a strain on all of us because of the support we received. My daughter herself has very few bad memories of that time, and was able to remain positive throughout, and feel good about herself for being strong and fighting cancer.
However, she didn't get better. Her cancer results were good, but she was still sick, sicker really, because during the cancer treatment, she might be paralyzed by the chemo (it affected her nervous system), throwing up or feverish or in pain, but this came and went. The medical staff space out the treatment so it's doesn't wear you down too much. But now, she was just sick all the time, feverish, in pain, exhausted, dizzy, confused, and of course now we know that was ME. But then we had no idea.
And it started: instead of being the brave kid who had fought cancer so hard, she was a kid with problems. "So there are problems at school, huh? You're not doing well at school?" the doctors started saying in a very unpleasant way. She was really taken aback. She was extremely good at school and keen on everything. They knew that.
"So there are problems at home, huh? Something wrong in your family?" We couldn't win. If the doctors didn't understand it, then it was the child's fault. This is, I think, the cruellest thing that has happened to her. Her self-esteem was attacked, she was questioned repeatedly about personal things, and told she was sick because she didn't try hard enough, because she wasn't good at school, because she didn't want to be at school, because her family was bad, because she liked being sick.
These were so far from the truth, I was amazed that anyone could even imagine them. This was the same child who had struggled so hard with cancer, kept her chin up all the way, and been admired by the same medical staff for her courage, positive attitude, talents and emotional maturity. Now, being sick was her fault.
Cancer is vicious, but you die or get better, basically. Chemo is awful, but you don't suffer all the time, only in bouts of months. You are not suffering at a terminal level for decades, which is what happens with ME.
And you don't get blamed for this horrible thing that has happened to you. That is indeed the cruelest blow. My bright, happy, enthusiastic daughter, who beat cancer, has now had to beat depression, which she didn't have with cancer, and which she didn't have with ME, until she was blamed for her own illness and received absolutely no support, despite being much sicker than she was when hospitalized with cancer. She has developed anxiety problems, which she never had before. She is afraid of doctors, when she had such a happy relationship with all the cancer medical staff. She wants desperately to go to school, despite being told repeatedly that she must be academically unsuccessful, socially inept and lazy.
And she is so much sicker. I have seen her paralyzed with chemo, running high fevers, and almost cut in half after the major operation to remove her left kidney. I've seen her lose her waist-length beautiful hair, have to spend months away from her home, school and friends, and deal with so much stress through the cancer. I've seen her suffer before, and it's the hardest thing any parent can have to watch.
But I've never seen her beaten before. Cancer did not beat her. But ME has.
Yes, ME is a horrifying illness, causing continual terminal suffering for years and years. It's much worse than cancer and chemo.
But I still don't think it would have beaten her like this, destroyed her self-esteem, left her shivering in the dark, if she had been treated like a human being.
Suffering and bewildered, she was blamed for her own illness and treated with hostility by people who have sworn an oath "to do no harm".
My young daughter not only has to cope with the continual suffering and incapacity of ME, she has to cope with being disbelieved, taunted, insulted and marginalized. That's what has beaten her.
[CBT is] not effective unless a person has underlying psychological issues with coping ineffectiveness, as with any other illness.
Name: SG Country: Australia
I have been through CBT. For help with the physical effects of CFS, it has done absolutely nothing. What it does help with is how I mentally cope with how I physically am. It's also helped my depression, in combination with a SSRI. I had depression long before I had CFS, so I suspect that makes it a different situation than many.
Name: Johnno Country: Australia
I allowed myself to be referred to and treated by the psychiatric lobby for three years, their diagnosis being post traumatic stress disorder, despite the absence of any specific trauma-worthy inducing factors in my life.
Consultations with psychiatrists turned regularly into discussions about my medication, usually SSRI's and the fact that they failed to address my symptoms at any dose, indeed often making me feel worse, in fact over-prescription causing seratonin syndrome at one stage.
Physiological symptoms were on the whole overlooked or interpreted as somatic manifestations of a psychiatric problem.
In utter frustration I eventually tracked down a professor who runs a ptsd clinic for Vietnam veterans, and after a six week appraisal period with him he came up with the opinion that I had been misdiagnosed, this was not ptsd, as he worked with it every day, and that my problem was physiological and probably neurological rather than the domain of psychology, there being no signs of psychiatric illness present.
So with three years wasted, and having been subjected to drugs which only seemed to inflame my condition I approached an ME/CFS specialist who tests and treats specific symptoms in line with clinical research findings that ME is a neurological disease.
After only a few months, various tests are proving typical ME abnormalities to be present in blood, neurological and endocrine systems, and have been given appropriate treatment.
Already we have mapped Insulin dysregulation; channelopathy problems; adrenal dysregulation; orthostatic intolerance; neurotransmitter dysfunction; and disregulated diurnal sleep patterns.
Bloods continue to show 5 times the normal levels of white cells, showing that the system is trying to fight off a pathogen, whilst a radioactive white cell scan showed no centre of infection, also red cells exhibit the typical clumping reported in clinical research, causing an extremely slow ESR, and blood too thick to negotiate the narrow capillaries of the innermost areas of the brain.
As a result of this scientifically based treatment I have improved dramatically, my most troubling symptoms are under control, and my physician is building up a picture of the systems which are not working in a balanced way.
I gave the psychiatric lobby the opportunity and co-operated for three years during which time I only got worse, and can only endorse from an experiential position the importance of scientific intervention by an informed physician, familiar with the idiosyncratic presentation of ME/CFS.
Dr Shepherd, in many ways the object of this post is to refute the efficacy of the psychiatric-based treatments which you and your co-horts endorse. Three years of CBT and monthly psychiatric consultation failed to address any of my symptoms at all whereas purely scientific medicine has in three months improved my functioning hugely.
My heart goes out to you all in the UK who are being prevented from accessing such vital yet simple intervention, and I support you in fighting the untruths and misinformation which prevents the severely ill from accessing appropriate treatment."
Name: A.H. Fife Country: UK (from letters to RiME)
Before March 1994 I was fit and healthy and employed as a Head of Year and PE / Maths teacher who led a full and active sports life. On 8th March 1994 I suffered a strange debilitating virus which eventually became so bad I was unable to work, (incidentally, there was a cluster of cases of M.E, affecting to varying degrees, a number of pupils at the school.) The NHS solution was that nothing could be done but it probably go within two years, which I refused to accept and set out to find the solutions privately.
During the following three years I deteriorated until in 1997 I was reduced to crawling to the toilet, being carried downstairs and spending the day lying as still as possible due to severe agonizing headaches. In addition I suffered from terrible weakness, muscle aches, severe dizziness, blurred vision, sore throats, sweating and shivering, swollen glands, highly light and noise sensitive and digestive problems. I was barely able to sit up to eat, unable to watch TV or even converse for more than about 5 minutes,...
Every day, seems like eternity, spent enduring pain, feeling so ill, like your blood has been poisoned, with the frustration of being trapped inside a useless body, unable to concentrate and needing assistance to do the most basic tasks. For a couple of months I suffered the humiliation of being unable to feed myself. Whilst I am able to do this now I still need help to get to the toilet, to wash and dress etc. it is like the seasickness adage. First you feel so ill that you are afraid you’re going to die and then it gets worse and you are afraid you are not going to die. I and most other sufferers, adopt a determined, positive and proactive attitude, which no doubt contributed to ME in the first place. Merely surviving these eight years of hell has been a far greater achievement than any of my academic qualifications, sporting achievements or job promotions.
Over eight years I have spent thousands of pounds, in vain, seeking a solution from many sources including ME Consultants, Acupuncture, Osteopathy, Homeopathy, Herbal medicine, Nutritional therapy, Kineseology, Hypnotherapy, various healers, very many nutritional supplements. Immunogiobin, B12 and magnesium injections with little or no help from the NHS.
Governments, researchers and fundraisers need to realize that it's not just about saving lives but quality of life and that with severe ME this 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 8 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% bums but with ME this results in deterioration rather than increasing my capacity. If only that was the answer I'd never be in this hell I'd have been well years ago enjoying a wonderful life that I had before ME.
It is a disgrace that there is no government funding research into aetiology of ME, (the only funding is provided through charities and donations, for an illness, which affects an increasing number of people of all ages) I urge you to ensure that this criminal neglect is ended now with desperately needed funded research into Neurology, Immunology, and other areas of dysfunction Severely affected sufferers must be included in any study, not just those well enough to attend the trials.
Name: N.B. Country: UK (from letters to RiME)
When first ill, after two and a half years in bed, I spent six and a half months in a psychiatric ward - the only help they offered on the NHS, I did graduated exercise and CBT, It did not cure me, I am still badly disabled with ME after 12 years and use a wheelchair,
Name: S.M. Country: UK (from letters to RiME)
Over 13 years ago my brother contracted an unknown illness rendering him bed bound and hospitalised at the age of 18. In hospital he underwent tests and was put on a program of graded exercise which left him flat out, bedridden, hardly able to speak or feed himself and unbelievably in the geriatric ward, a totally unsatisfactory and inhumane treatment,
My parents took him out of hospital and have cared for him at home, trying to understand this illness. Until 18 months ago he had made progress and had reached a level where for short periods of time he could watch TV, use the Internet and get around the house in a motorised wheelchair. But after trying to get better to everyone's disbelief he deteriorated to a condition even worse than before.
He is now lying in bed in a darkened room, again unable to stand light and sound, unable to sit up in bed or even roll over. He can only move his forearms and speak for extremely short periods of time. He is being cared for, spoon fed and toileted by my parents and has absolutely no quality of life. This leaves my parents with a life of hard work and stress beyond belief and no rest.
I believe the only way forward with this illness is for the medical research council to fund proper research as stated on the petition. Everyone is entitled to some quality of life.
Name: J.S. Country: UK (from letters to RiME)
Severe ME is not cured by cognitive behavioural therapy anymore than a severe type 1 diabetic would be, who is in need of insulin.
Name: R.I. Country: UK (from letters to RiME)
The exclusion clause, " ... but with the exception of psychiatry . " in your petition, appealing for a co-ordinated research progamme into the aetiology (underlying causes) of ME. begs the question why psychiatrists should be involved in the treatment of people with M E , unless they have a history of, or a concomitant, psychiatric illness. It is understandable that people with M.E. are fed up with the loss of career (or interruption of education in children), reduced standard of living, social isolation and fractured relationships, sometimes compounded by disbelief & derision, on top of the discomfort of the illness, but this is not the same experience as clinical depression, which is not thus explicable. Of course, some people with M.E. may have depression, or some other psychiatric illness, but the one is not a prerequisite for the other.
Since M.E is classified as a neurological, not a psychiatric or mental illness, it may, at first, appear hard to see why psychiatry has taken such a dominant role in research and treatment.
Chronic Fatigue Syndrome is an umbrella term, under which a number of illnesses, in which chronic fatigue is but one symptom, are contained, ME is much more than mere tiredness The terms are not interchangeable as putting a / between them suggests.
Since we are not talking about the same illness, there ought to be different research strategies and the treatments suggested by findings as suitable for one condition, for example graded exercise or cognitive behavioural therapy, may not be suitable may even be harmful - for the other.
Many of us think CFS needs to be "unpacked" redefined, or abandoned altogether. Thanks for your initiative, in particular on behalf of those who are so severely affected that they remain isolated, invisible, without a voice.
Name: P.L. Country: UK (from letters to RiME)
As a social worker, I have met several people with this illness, I was very surprised to hear that the Government is funding no research into its underlying physical causes.
In addition to the human suffering there is the question of cost. ME currently costs the country over £4 Billion pounds per year The state has a duty to investigate. What is behind this much misunderstood illness and enable people to improve / recover so they can resume a useful role in society.
The small sums of money which up to now have been spent on psychiatric models of treatment are not working and are inappropriate.
Name: M.S. Country: UK (from letters to RiME)
When I contracted ME, I was a young student. Doctors were unable to diagnose or treat the illness but they maintained a professional interest, gave me (the patient) the benefit of the doubt, and were interested in learning more about ME.
The power and influence of the psychiatric lobby changed all this In recent times, I have either been treated as a psychiatric case who needs to be humoured or a difficult case that dues not fit into any medical category and which can be ignored. I have been put on Graded exercise and CBT Programs which have led to a deterioration in my health.
Psychiatric bias and manipulation of the facts has adversely-affected the way that I and others are treated by GP's, Consultants, employers and family, even.
Name: Naomi Country: United Kingdom [Online]
My name is Naomi, I'm a twenty year old woman from south England. I became ill when I was fourteen years old, in the middle of secondary education at a school of high standards. As I fought for diagnosis, struggling to keep up with classes and appointments, the school became very impatient. After infinite testing and stress I finally got a diagnosis of chronic fatigue syndrome, when I was sixteen, just after my G.C.S.E.'s. With my newly issued doctors certificates I was determined to prove to my teachers that I was not just lazy as they had suggested, so I decided to stay at school to study for A-levels. The school didn't become any more cooperative and made things very difficult, but despite having to miss much of the courses I was taking, I passed my A-levels and left the school.
I am currently too ill to pursue a career of any description. becoming ill so young has meant that I have never had a real job. I do have supportive friends and family though and I'm very happy with my lovely understanding fiance. I live with my fiance, our two dogs and two cats. My interests include art, films, music, cars, pets, poetry, sports, tv, science, psychology, television, good conversation and anything funny. Before I became ill I was a fun loving, social person who would try anything once. Now I'm a little more conservative, but still love a laugh.
Name: Tritt Country: US
CBT only helps deal with profound loss – grieving, CBT is NOT a CURE for PTSD, panic attacks, OCD, DEPRESSION, nor CFIDS or FM, ALL of WHICH ARE MEDICAL PROBLEMS. CBT just helps deal with re-establishing human value (despite imperfections of chronic disease processes) & choosing more realistic expectations. 6+ years of CBT only helped to heal and grieve from profound losses (I came down with CFIDS & lost ME & my career, home, marriage, car, etc.). But then 12 STEP Programs were even more helpful. Living the 12 STEPS are having a 'framework' for grieving & dealing with disappointments & loss plus, like CBT helps to derive a "HOW TO" live as functionally as possible! And with NMH - blood pressure disorder that gives symptoms of PTSD, treating the medical issue is imperative! CBT only helps to realize you can choose NOT to GO TO ADRENALINE most of the time (unless you get a shock)! Insurance Companies have a LOT of $$$$ invested in getting people misdiagnosed with 'mental illness' so they have 2 yr limit on LTD, so they won't allow medical information to be publicized, and the pharmaceuticals are making BILLIONS by TREATING SYMPTOMS only! BEWARE!!!
Name: Flora Country: UK
I am Flora, mum of Samantha aged almost 16 and poorly on and off since aged 6. It’s been horrendous with doctors saying, ‘pull yourself together’ ‘low pain threshold’ ‘school phobia’ etc.
Sam was eventually diagnosed 2 years ago and has been out of school almost 4 years. She was severely affected, still is ,but at beginning of 2003 she was seen by a psychiatrist. We had no choice but to see her ..we needed some help. Fortunately the young girl was nice and not one for "pushing" depression or psychiatric issues.
She did advise CBT however and we took Sam. Firstly ..they don’t have a clue and arranged her appointments early in the morning.. we had a 15 mile each way drive. 1st visit we all saw two therapists. We were asked family history etc and really made to feel it was in some way our fault. 2nd visit Sam saw therapist alone. She talked about Sams thoughts and views on various things and according to Sam made her feel about 5 years of age.
3rd and final time ,after then not being willing to give later appointments Sam came home in tears. She had been asked to draw her picture of different feelings she had..happy,sad..angry etc. She was then asked questions like" if the neighbours dog did a toilet on your path who would you get to clean it?? How would you feel and what would you do about it?"
This was the final straw and we never went back. Samantha's words were " I feel so belittled mum".
GET: We had a physio come to the house at the same time as above. She wanted to get Sam walking 50 yards ASAP. Her first method was to have Sam on her knees in our front room picking up sweets off a plate with her mouth. Needless to say we stopped that rubbish too. Sam can now manage a visit to a shop in wheelchair occasionally and isn’t bedbound (even if almost housebound). [CBT and GET are] useless, stupid and WRONG, that’s our opinion.
Name: MONIQUE BRENNAN Country: UK
Firstly, I had never heard of such an illness when I frist became ill in July 2004. In fact, I rarely became physically ill and so such illnesses were of little interest to me being a healthy person and busy finctioning at a full capacity. I remember the morning well. I had, had a bad nights sleep and had been having night sweats for a few weeks, so bad that I had to get up in the night to change my clothes and bedding. This particular morning I felt as though I had been fighting off a flu or something, it was winter and I had, had my flu injection but being around a lot of students I thought I may have caught something. My throat was very sore, I had bad stomach pains and I felt giddy, foggy in the brain and generally unwell. I was do to do my counselling exam that morning which was a practical exam. I had always done well in exams and particularly exams I had to talk in so I was not particularly worried. During my exam I could not think, could not function and I realised I felt really unwell and had to defer.
I thought I would be better in days, but over the course of the next 10 days I became incedibly worse. It was as if I was drugged, every limb and bone ached in my body, my glands were inflammed and hurt, I couldnot tolerate light, sound. My limbs spasmed and I couldnot rise from the sofa for 10 days until my partner decided this virus was going on too long and got me to a doctors. By this stage I could hardly walk, my left side in particular my leg was not coordinated, muscles extremely weak and I truelly felt as if I was dying. I had gained 20 kilo's in fluid that made my once thing face look like a frog and my left leg extremely swollen.
Bad virus the doc told me, keep taking meds it will sort itself out. Went to 3 more docs same thing, wait it will go. Well it didn’t go, infact it got worse, now I was almost bedridden and had to pace out activities and sleep inbetween. 3 months later Doc said chronic fatigue syndrome, stay on meds, you must begin graded exercise program, take anti-depressant, eat well and you will get well oh and lose weight she said.
Mind you I was 60 kilo's before illness and suddenly balooned to 83 kilo? never had been so heavy in my life and it was a puffy heavy with swollen belly that reacted to everything I ate. So began to push myself with walking stick 5 mins a day walk, somedays o.k., some days too sick and in pain to walk again for
several days. Took 6 months to push myself to 25 mins a day with no improvement in health or fitness level as compared to years previously where I actually worked as a fitness instructor and I knew something was not feeling right here. I was becoming weaker instead of stronger, inflammation was increasing, breathing problems increased, swelling on left side increased to noticable and frightening amount. All in all this was not working and I was putting 100 percent into it. Doc just looked bored, ‘keep exercising.’
Talked to psychologist I had seen for trauma. CBT, I knew CBT like the back of my hand I had been learning it for 8 years. She spoke of CFS as if it were a psychological disorder, I felt very peerplexed, I had studied Psychology long enough to know this was not in my head, it was in my body. No amount of CBT logs worked for this. It is not your thoughts that need reprogramming, it is your body that needs healing and it is other peoples thoughts that need reprogramming in understanding that anyone this
alone, this ill, this scared, this disabled is going to be suffering depression and anxiety in due course from no one addressing their actual needs. 12 months has passed, no one has helped. Today I got a referal to
_______ hospital to a doc who supposidly treats ME/CFS. I think its very sad I was left for 12 months in such pain, disability and fear with a 12 year old to care for, before anyone actually acknowledged something is very wrong.
Name: Luke* Country: UK
In the early days of being ill (when it was originally thought that I was suffering from acute stress), I was advised by my GP to take longer and longer walks each day. This I faithfully did, until one day my legs gave way suddenly and completely, pitching me onto the roadside.
Fortunately, living "in the sticks", with rarely a car passing by on the tiny backroads, I wasn't involved in an accident. It took a good fifteen minutes or so for enough strength to return for me to be able to stumble to the nearby post office, where I was immediately offered a chair and a glass of water. It was a further twenty minutes or more before I was able to struggle home.
This event turned out to be a landmark in the further downturn of my condition.
I was also offered half a dozen sessions of counselling on the NHS, during which the counsellor (bless 'im) attempted to teach me to juggle. Although I approached the task with dogged determination, I was completely unable to learn, because of marked loss of coordination, bad balance, lack of muscle strength, difficulty with concentration and visual disturbances (not to mention the blinding headaches etc.) and rapid exhaustion, which, of course, all made me feel even worse physically, not better.
With hindsight, I realise that both these attempted activities were beyond my capabilities at that time, and may actually have done me long-term harm. I clearly allowed myself to be pushed too far, and that, I am sure, was ironically because of my usual determination to solve problems, overcome obstacles and do a job properly.
Nowadays, although I still have a similar determined approach to life, it is no longer "terrier-like", but gently persistent - and realistic. My concern about approaches to treatment for M.E. such as CBT is that patients are "persuaded", against their better judgment and experience, to attempt far more than they are actually physically capable of, being made to feel that they have the "wrong" attitude of mind.
As a result of following a course of CBT years ago (although it helped me psychologically to cope with being ill), I tried persistently to not use my walking stick for some time. Again, with hindsight, this made my walking problems worse.
I can't blame anyone for what happened to me in the early days, to be honest, because these "treatments" may well be very appropriate for, and beneficial to, someone suffering from stress, anxiety, depression etc. But they clearly weren't appropriate for someone in my condition.
Name: Suzy [from Invest in ME]
‘A nasty deterioration started to set in quickly. Apart from other worsening problems that Suzy began to experience, she found herself needing to lie down for most of the day since any activity, physical or mental, was becoming impossible.
Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.
The months dragged by. For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement.
By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.
Eventually (making it sound much simpler than the choice actually was) we decided to reduce this procedure to just once a day instead of twice, and to aim for one hour of time awake for Suzy between 7 and 8 in the evenings.
As before, Suzy would only wake up after Mum or Dad had sat beside her bed for 3 hours gently trying, very occasionally, to coax her out of her comatose state.
We gradually reduced this 3 hour period, but it took over 18 months (until around June 2004) of painfully slow improvement in Suzy's state, for us to dispense with it altogether.
Suzy's motivation for waking had always been that she was desperate to try to eat (even though this wasn't always possible), as she was so fearful of being tube fed as we were told must be the case----- just as she begged us not to let her be hospitalised, as this was also something we were facing.
(It's only by understanding gained from living with this condition that our desperation to keep our daughter at home could be understood.)
Suzy was in a "living death" state for the first two years after her illness became really severe. Many would still regard her as such since her condition remains very sad.
Even up to around October 2004, two people in the room or one person stringing more than three sentences together was too much for her. Thankfully, things in this respect have now improved. Though the two people are still mostly restricted to Mum and Dad, wonderful exceptions have begun to happen recently for 10 - 15 minutes later in the day.
Suzy's life was, and still is (except for her fans no longer being continually on), spent in a perpetually darkened, unheated, noise-free room. There are blankets over the curtains---- despite it being a north facing room; bedside fans are periodically on---- even though she only wears thin short-sleeved T-shirts all year round and; ear plugs in----- even though the room is in a very quiet location). (…)
There is a positive movement---- albeit inconsistent---- undoubtedly happening in Suzy's condition. In fact recently it is happening relatively quickly. We are just so frightened of when and where it might stop.
We feel this improvement has emerged because of our developing confidence in being able to reject [psychiatrically based] medical approaches to Suzy's severe ME, and to the departures we chose to make from these treatments. (…)
2. We were certain that the graded exercise program Suzy followed in the early stages of her ME was a big mistake. We had no hesitation in no longer sticking to any kind of graded exercise routine. Instead we took the approach of letting Suzy do what she felt she could do----- which for nearly two years was nothing at all. This is a second option we are convinced we made the right choice over.
3. Stopping the involvement of psychologists
A third decision we know to have been the right decision, was to stop the involvement of psychologists in an illness we are convinced is not psychological.’
Name: Ken Country: Australia
There is good CBT and bad CBT. The critical difference between the two is the issue is control. In spite of what many esteemed professionals think, most PWC's know their condition better than anyone else. Most tend to overestimate their capacity. CBT or GET that pushes a PWC is likely to fail, through relapse, withdrawal or refusal. Sensitive, responsive therapy may help, but lets be realistic here. Any gains made are likely to be modest at best - if you doubt it, look at the research.
Scientists get excited about "statistical significance", but the actual size of this difference is always small, if it is found at all.
Name: Emma [from Invest in ME]
‘This was the second paediatrician I had spoken to, the first wanted to repeat all the blood tests from a few weeks before, and was suggesting anti-depressants and a hospital stay before he'd even seen her. Emma was now so noise sensitive that I couldn't listen to the radio at home and the thrice-daily playtime at the nearby school would reduce her to tears. She was also very light sensitive and had the curtains permanently drawn. Bright lights or sunshine made her to weep with pain. Hospital would be agonising.
We borrowed a wheelchair from the Red Cross, bless them, to get to appointments, and to escape from the flat we went out using my new toy, a bat detector. Fortunately there was a roost just up the road that was accessible by wheelchair and bats like it quiet and dark too.
Some time around May or June 2003 I got a letter from social services asking me to contact them. In my innocence I thought it was a follow up to our claim for DLA (Disability Living Allowance), so from the disability team offering support. Not a bit of it, my sister had reported me for suspected Munchausen's by Proxy. The fact that she hadn't seen us for two years hadn't held her back. So to add to the difficulties of dealing with the school, the benefits system, a paediatrician from hell and a sick child, I now had to deal with a social services investigation. Fortunately, I laughed it off and suggested they check their files - we'd been there before when I wouldn't play ball with my dysfunctional family and that social worker had decided that I deserved sympathy: she found my family overbearing. I heard no more about the investigation, just silence. But it meant that I felt as if I couldn't contact Social Services for support in case I reopened that particular can of worms.
We also had a visit from the medical examiner from DLA. I'd read such horror stories of DLA being turned down that I pushed Emma to overdo it the day before so he could see how ill she really was. It was a mistake. She was back to having full body spasms, having to be held down on the bed so that she didn't involuntarily flick herself off on to the floor. It also took weeks to recover.
Another little humiliation was the monthly visit from the Educational Welfare Officer. He was pleasant enough, but the permanent checking up by officialdom was not. It also used energy better spent constructively.
This isn't all doom and gloom. Now, in April 2005, my daughter is much better and is doing her best to "pass as normal" at college. She's attending part time, taking 3 AS levels to add to the 5 GCSEs she passed well last summer. It has taken all this time inching forward to get this far, including over a year using a wheelchair. We passed on the GET (graded exercise therapy) and CBT (cognitive behaviour therapy), which was all that was on offer and relied on pacing and diet as treatment - going it alone.’
Name: Teresa Foley, PsyD
I am a doctor of psychology, and never did like cbt but it is being used because there is [sometimes] a short term gain which is mislabeled as success. Then another symptom appears and cbt is used again. It is short term and the insurance companies like it. The insurance companies and the drug companies decide what "works"; despite the research to the contrary, they continue to pay for cbt but not psychodynamic approaches, which I feel are most beneficial. When someone has this illness, it helps to be listened to, and heard, and then to check in and repeat what was said in a different statement to check and see if the therapist is following the client.
I cannot see how beneficial it is to blame to patient as in: what are your thought forms/schemas and what is the antecedent that led to your disorder, and then finally the solution. NOPE. It nicely puts a ribbon on a difficult situation and blames the patient in the process. As if the thought forms caused the "problem". I believe we create our reality in relationship to other people and outside influences.That is why cbt is so narrow and in the end does not work. If the therapist instead met the client at the point of reality that is the client's reality and followed from there, it empowers the client, educates the therapist, and a new reality comes bursting from this interaction providing there is sufficient therapeutic alliance.
I have had ME/CFIDS for several years. Over that period, there have been several therapists who did their best at getting me into "a happy mood, strategies for living, and the original story/or theme that caused the depression. antecedent, behavior, and response." The idea that I had several ways to interpret my "condition" was pejorative at the least. It is v easy to be a therapist who has never been taught to be with those who have chronic illness. Just be with the person, not try to fix it. It isn't fixable, but resources are welcome.
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.’
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.
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.
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
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 ;-)
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.]
NOTE: An * denotes that a name has been changed by request for the protection of privacy
SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE (Word document) ISSUED JANUARY 2004 Analysis Report by 25% ME Group, 1st March 2004
Results of survey:
Graded exercise therapy: 95% found it unhelpful
Cognitive behavioural therapy: 93% found it unhelpful
SOME FACTS AND FIGURES ON CBT, GET AND OTHER APPROACHES Directly from the 'Horses' Mouths: written by Doris M Jones MSc.
In July 1998 the then Chief Medical Officer, Sir Kenneth Calman, announced the setting up of a Working Group on CFS/ME, to include patients, carers, patient group representatives as well as medical experts, including Psychiatrists. The aim was to find out what really worked in treating these conditions and based on findings, to then compile Guidelines on Diagnosis and Treatment for Clinicians and other Health Care Professionals.
Over 80 people took part in this 3 year exercise, including myself. Eventually details were available on 3074 patients, and the summarized results showed very clearly that:
1. The most helpful strategies were:
a) Pacing activity with rest (2300/2568 cases = 90%)
b) Bed rest (2165/2426 cases = 89%)
c) Dietary changes (1496/2226 cases = 67%)
2. The least effective strategy was: CBT
3. The most harmful strategy was: Graded exercise
Surely it is time that psychiatrists took some notice and actually listened to what patients tell them. I have yet to come across a patient who complains about any treatment which works, whether this is allopathic, psychological methods (like CBT) or exercise regimes (like Graded Exercises). If it works, no-one will complain; the problem is these approaches very often don’t, and this is the one and only reason why patients are so persistent in their demands for other options and are determined to get to the real causes of their ill health. One thing is certain: psychiatrists have made things worse for many, in more ways than one.
Includes comments from 25% members on CBT, GET and the effect of the ‘psychiatric’ approach to M.E.,
"This will be revealed as one of the biggest medical scandals in history" declared a severe ME sufferer. This Report, based on an email survey of sixty- four severely ill, classical, Ramsay-defined ME/CFS sufferers, with a "multiplicity of symptoms" including, muscle phenomena, circulatory impairment and cerebral dysfunction (Ramsay 1988), was conducted at short notice in December 2005 especially for the Parliamentary Inquiry, by the 25% Severe ME Group.
"It is bad having severe ME but not as bad as being treated as a time wasting malingerer by the medical profession and the Department of Works and Pensions", remarked one respondent.
A respondent describes how "This illness makes life hard enough as it is. It is so much worse that, whilst there is the ability to investigate this illness, that opportunity is being deliberately ignored. The choice the medical profession is making to treat a physical illness with psycho-nonsense is never going to cure anybody."
Another sufferer sums up the situation: "If the psychiatrists continue to influence research and funding into ME we will never receive appropriate treatment or recognition for the severity of the illness. The many biomedical discoveries into abnormalities in ME patients are ignored by psychiatrists who inform the world (including our GPs and all medical staff we come into contact with) that we are suffering from a somatisation disorder…If the government continues to be informed about ME by a wholly inappropriate sector of the medical profession then many thousands of severely ill people will continue to be seriously ill and not taken seriously."
A sufferer recounts a typical experience: " I have been turned away by a neurologist, who did no tests, his comments were ‘ you need to get out more’. I am severely affected and 80-70% bedbound, 90% housebound. I am desperate to be free of dreadful pain and illness, and go out and live my life. I cannot find the words to express how frustrating it is when the suggestion is that I am in bed ill out of choice. ….I have been told by an ex-friend that I might be attention seeking, and that if they don’t give me attention when I am ill, then that is best for me. I have even been told by a GP that if I meet someone and fall ‘in love’, I might find all my symptoms disappear".
There were many other such horror stories:
Sufferers -- who are desperate for physical research and treatment -- are very aware of and extremely angry about the impact of the predominant psychiatric paradigm upon their life:
Another sufferer describes how, despite an "extensive psychiatric evaluation" which resulted in a report saying ‘she is severely physically disabled’, ‘has no mood or behavioural problems’ and ‘is coping remarkably well given very difficult circumstances’, she was still offered "CBT and counselling and my symptoms of severe nerve pain, nausea, difficulties with speaking, sight, swallowing and eating, seizure like brain activity, intermittent paralysis, contractures in hands and feet etc were left un-investigated and untreated."
This sufferer states how: "I could see the sense in graded exercise and how it could help someone to comeback from an illness and aid in their recovery but unfortunately with ME this treatment does not work and just sets you back".
"It is totally unacceptable that I should be put through this distress because of ignorance about the severity and reality of my condition and disability, as a person really suffering with severe ME" asserts a sufferer.
"We wish of course that we could recover from the illness, and resume a normal life, with a little graded exercise/activity and a positive mindset. It would be the perfect solution without having to resort to drugs and the risk of side effects. But it simply doesn’t work for those correctly diagnosed with ME and in some cases can actually make matters even worse", says this respondent.
"I no longer see medical professionals because it is so hard to tell who is biased and who is not until it is too late. The absolute worst are so called ME specialists as they do not admit that they think ME/CFS is a behavioural disease and they put on the charm offensive, they are such liars and cheats" another sufferer complains.
"ME patients not given proper consideration when the diverse range of symptoms are classed as being "all in the mind". As a consequence my own condition deteriorated to my requiring 24hr care with a rota of three nurses and my husband to care for me" this sufferer stated, showing how dangerous ill-informed treatment can be.
"CBT in particular is understandably appealing to the DoH as it’s an apparently cheap option to deal with an expensive problem. But it appears to be a red herring dressed up as a cure by those who seek to deny the physical reality of the illness" points out this sufferer.
And another sufferer tells how:
After exploration into Dr S’s methods (treatment with antidepressants) I declined to attend. Firstly my condition bears no relation to that of the one described as Chronic Fatigue & secondly, I’d been prescribed several antidepressants when I first became unwell. They produced near catastrophic consequences & I had no wish to repeat this experience!
This report paints a desperate picture. Surely our respondent was right to call this a "medical scandal" of gross proportions.
Despite the real danger of Graded Exercise Therapy being harmful to the severely affected, 44% of respondents were still offered this intervention.
Every survey of sufferers (and this one is no exception) seriously calls into question the efficacy of GET and CBT: 96% and 95% respectively of respondents who tried it said that it had a negative impact upon their symptoms, yet as this report shows, this is often the only "treatment" on offer to sufferers and is the one being vigorously pursued by Government.
Significantly more than half of those offered CBT or GET refused the treatment; that is because, as the study has shown, people are very aware and are simply not willing to be made worse. However the bleak reality is that more than half of sufferers, each one on average experiencing more than 20 severe neurological, autonomic and endocrine symptoms, are just being left to get on with it, with no treatment whatsoever, some for decades.
This report has presented shocking evidence of abuse at the hands of the psychiatric lobby. Our members have reported being locked in secure psychiatric wards or AIDS units and their lack of response to "treatment" being taken as an indication of their misguided thinking.
It is time to acknowledge and address the main issues underlying the reasons for this abuse.
Click here to read the entire document; many more quotes from severe M.E. sufferers are given in the text, as well as some high quality medical information, this text is highly recommended
While reading these case studies/patient accounts, please be aware of the following facts:
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies/articles and books refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies (etc.) to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting Research and Articles on Myalgic Encephalomyelitis into Context.