|
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.
Comments from Greg Crowhurst of the 25% M.E. Group to the Gibson Enquiry; December 2005
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:
- All nurses I have encountered, bar one whose daughter had ME, have treated me with contempt, lack of understanding and actual neglect during a hospital stay as they had "far worse off patients than you" to care for.
- Even now, after engaging in another battle with the local health authority because I was confronted with a doctor (previously) who would not even discuss a report with me which had been produced and provided by the ME Specialist I saw, I feel the new doctor, at times, is merely paying lip service to the fact I got put on his list via the local health authority, rather than by his choice. This, lately, has caused him to develop an "attitude" with me and I keep biting my tongue when confronted with such an attitude. Not only is it appalling behaviour but I believe he is trying to see how far he can push me and then he can feel justified in saying to the local PCT he wants me to be removed from his surgery list.
- A hospital psychiatrist put in my notes that she suspected anorexia as I was very underweight - my inability to chew solid food due to muscle weakness and oesophageal spasms were classed as anxiety related. If they had been classed as the physical problems they were, I would have been put on a high protein liquid diet (or even been tube fed which would have been a Godsend) and given muscle relaxants to stop the spasms – both of which would have been invaluable. Once I was back home, my GP prescribed the muscle relaxants I needed (at my request) and I easily gained weight on store bought high protein shakes. Yet the anorexia notes are still in my hospital file and place a stigma on me which colours any future dealings with hospital medical staff, despite me proving that anorexia was not the issue – a physical difficulty was, and despite an earlier psychiatric report which stated I had no behavioural problems. No matter what evidence to the contrary, the psychiatric label prevails.
- I have been shut in an AIDS ward for 7 weeks and the staff have been told to ‘’Limit Patient contact’’ and ‘’Write down everything he says’’ despite being mentally sound, and never sectioned. This was in an Immunological ward. Astonishing that this should happen in the NHS after so much is known about M.E
- My GP’s practice seems to have the opinion that ME is nothing, and that it is related to depression, and that if you are in bed, then you have "given in". When I have tried to explain to my GP how ill I feel, or try to explain different symptoms, I feel I am not believed or that I am exaggerating…A family member asked me about my illness, and when I tried to explain what I was feeling, and how difficult it made my life, she dismissed every thing I said, and ended the conversation by saying that I "should be locked up. And that I was not fit to be out, and I should be locked in the Psychiatric unit immediately"
- My GP gave me a leaflet his practice had received from Simon Wessley’s unit at Kings College Hospital in London. I read it and said that the condition it described had no similarities to what I was experiencing. He suggested I go for an initial assessment anyway which I did – at great cost to my health. On arrival I was horrified to find that the ‘CFS’ unit was in the psychiatric department KCH and at that time, security doors protected it. I was also concerned that I was attending a ‘CFS’ unit since this label did not describe my complaint. It came as a shock to be seen by a psychiatrist who displayed little or no understanding of what I told him. My symptoms, most of which are included in the Canadian Criteria, were dismissed or ignored. At the end of the consultation he suggested a course of CBT and said I should take up exercise and get some hobbies. Six months later I was called for a course of CBT which I declined. The therapist became aggressive and defensive when I explained why.
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:
- It has destroyed my life. Now 22 years in severe ME state with no appropriate treatment for a neurological illness.
- ….terribly bad -- makes my situation twice as hard – now I have to deal with the illness and the negativity of the medical profession and media. I have been ignored by the medical profession on the whole, and at other times ridiculed and verbally abused. This has all caused me untold stress and suffering.
- It ruins lives. If you do not respond to CBT and Graded Activity you are given up on. The medical profession, and lay persons, think that ME is just pain and fatigue and we are all depressed, even in the face of evidence to the contrary. The only treatments offered aim to correct these symptoms, and any other symptoms are classed as psychosomatic. Because of this serious, debilitating and potentially life threatening symptoms are left untreated causing unnecessary suffering.
- I feel that I have to constantly explain myself. I think most people understand and believe I’ve got a real physical illness…but there’s still this idea that there may be a psychiatric component to it. I feel that if I had another more recognised neurological illness like MS I wouldn’t have to continually explain things.
- THEIR ATTITUDE HAS been an absolute bane on my health and well-being. I have had problems with doctors, benefits, and my permanent Health Insurance thanks to the psychiatrists’ attitude towards ME and appalling treatments suggested.
Since contracting ME over 10 years ago I have experienced misunderstanding, neglect, rudeness, ridicule, ignorance and what can only be described as downright cruelty from almost every area of society (medical profession and some ME charities & their officials included).
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!
Conclusion
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.
NOTE: An * denotes that a name has been changed by request for the protection of privacy.
 |
