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.
