Before becoming ill, I was extremely sporty. Initially, after not being able to rest when having a virus on a school trip at an adventure centre and made do all the activities and never recovering, I was only very mildly affected. This I put down to giving up sport because of the muscle problems I developed so for the early years, I was able to go to school and then college full-time although I had to make cut-backs in most other areas of my life and, as my brain didn't work as well, struggled.
Anyway, my condition suddenly got much worse in the middle of my second year exams (a few hours after a tough 3-hour maths exam where I pushed myself hard to do questions (got a first, by the way), my throat swelled up and I felt feverish). Kept trying to exercise during the summer but developed more and more muscle problems - the physios said they never saw anything like it and x-rays of my back showed inflammation along my spine. I took a year out of college as felt I wouldn't have been able for my finals with the health problems I had and set about trying to get back to normal health by gradually trying to build up the exercise.
Instead of improving, I kept getting worse and worse until I virtually collapsed and have been chronically and severely affected ever since and need a wheelchair to go distances more than 50 metres.
As nobody went to bed when they were sick in my house, neither did I so my symptoms in the early years could not have been put down to deconditioning.
I get so annoyed reading all the rubbish that is written about exercise and M.E./Chronic Fatigue Syndrome. Drugs which make a significant percentage of people worse are usually banned or have big warnings yet exercise ruins the lives of lots of people with ME/Chronic Fatigue Syndrome, like it has done mine, yet most medical people often aren't told by the people advocating the approach how dangerous it can be for patients. It really is unbelievable.
As I am so ill, even too much activity in my life (which is lived in the ground floor of my parents' house) can cause my glands to swell and my throat to get sore and generally feel malaised so I simply can't do this treatment now. I went to all this trouble to warn others - patients shouldn't have to wait until they are harmed by a treatment to learn it is a potentially dangerous treatment - they should be able to learn from other patients. If I had come across this information years ago, I might now be living a more normal life, rather than the life of a very disabled person.
Exercise - handle with extreme care- ruined my life.
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.
Firstly, It took 8 months to be diagnosed with ME. 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.
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."
I have been severely affected by M.E. for the past 14 years, completely bed bound for about 10 of those years, and had between 5% and 10% of my former health for the other 4. When I read headlines saying that an exercise regime was the answer to my ill health I couldn't understand it, as every time I tried to push myself physically even in small incremental steps I would deteriorate significantly. The last time I was able to walk I managed to convince myself that I was heading for a full recovery, and so increased my activity regardless of whether I was able for it, the result of this is that I have been unable to get out of bed for the past 6 1/2 years.
Graded Exercise is the worst possible thing for M.E/CFS (strictly defined).
This is not to say that anybody with M.E. should not exercise, common sense tell us that it is preferable to be as active as possible, but in my experience it is critical to stay within your limits, whether that is a 20 minute walk or in my case a tightening and relaxing of my muscles 2 or 3 times a day. Having learned the hard way in future I will be allowing my body to dictate the amount of exercise I do even though that is one of the most frustrating things about this illness.
Regarding how exercise has come to be recommended by some medics, all I can assume is that they have not read the research behind the headlines, as even a cursory glance at the methodology reveals a sloppy scientifically lame approach biased towards a psychiatric model. This is wholly inappropriate for many reasons not least because M.E is classified as a neurological disease and upon closer inspection a proportion of these researchers may benefit financially from M.E being "treated" with graded exercise.
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.
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 genually 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 yearold to care for, before anyone actually acknowledged something is very wrong.
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.
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. 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!!!
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.
Many years ago, when I was only moderately ill I tried a series of graded exercise therapy at a highly regarded private hospital down here.
The first time I was inpatient for 4 weeks and then an outpatient for about 6 months. This occurred directly after a long series of debilitating infections had finished, and I did indeed appear to get somewhat better. At the time I was very excited and positive about it all and thrilled at what seemed like it could be the start of getting my life back. I gave it all I had and the practitioners were supportive and helpful most of the time.
Unfortunately, after that first success I kept sliding back down the slippery slope to illness and four further attempts gave me ZERO further relief.
My personal theory is that I was debilitated after the infections to a greater degree that the ME/CFS was acting, and it was this short-term weakness that I overcame with the GET. Certainly when I tried again and again afterwards, working just as hard and with just as much enthusiasm (after all - it had seemed to work the first time!), nothing at all happened.
Actually, after it became obvious that I *wasn't* improving on subsequent visits the staff at the facility got quite nasty, telling me I needed to have "a good hard think about my motivation" and similar idiotic bull**** implying and flat-out stating that I wasn't trying hard enough, basically.
I’m in contact with many people with M.E. both by e-mail & letter & it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching & lecturing in 1986/7 & now spend any energy I get on writing (mainly poetry – my passion, but also short stories & articles) & painting, which I’ve always done, but ironically can now spend more time doing the things I love most…
I was supposed to do an M.Ed. in Human Relations at Nottingham University from October 1990, but I had to give up my place due to ill health. They kept my place open for me the next year, but I was never well enough to do it. I wanted to become a counsellor.
M.E. is really a rollercoaster of an illness. For about 11 years until 1997 I used to run a self-help group & was a counsellor for women with Endometriosis (allied to the Endometriosis Society), which I had since Christmas 1980 & it started together with M.E. & an under-active thyroid after a very bad upper respiratory virus from which I never recovered.
In December 1980 I had a ‘knock-out’ type virus with chest pains, exhaustion, muscle pain & weakness, sweating, severe head & neck pain, shivering & shaking, difficulty breathing, sleep disruption with nightmares, nausea, dizziness & swollen glands. Menstrual problems/pain were exacerbated after this viral infection. I had 5 weeks off work (teaching). When I went back to work, I became increasingly exhausted with viral symptoms as I have previously described flaring up. I had severe chest pain & palpitations on exertion. I really thought I had a heart problem. With exhaustion & new menstrual symptoms of severe period pain, painful ovulation, heavy periods, pain in lower left side, bowel pain on a cyclical basis & bad PMS, I became increasingly depressed.
All the above went undiagnosed for years by my former GP, who told me it was all ‘psychosomatic, nerves, stress, being a woman!! etc, etc’, but when I was rushed into hospital, as an emergency for surgery in 1983 for Endometriosis, then I changed my doctor to a female doctor at a different practice (she has recently retired), things began to change, though it was always a real battle to get all my symptoms believed & diagnosed, probably because of the way I look… I was always told I looked too well to be ill!!
Most people know very little about M.E. & don’t really care about it, until they have it or someone close to them does, but that is human nature & you can only really appreciate how an illness makes you feel, if you suffer from it yourself.
People find illness, when something tangible isn’t visible, always difficult to accept.
As I’ve had M.E. (I’m not bothered by Endometriosis now, as I had a total hysterectomy in 1989 & have daily Thyroxine for an under-active thyroid, which was detected in 1991) for 25 years, I have now come to terms with it, though it still causes intense frustration for me, because I am naturally a very active person & have loads of things I want to do in life.
Ian, my lovely husband &, has been so important to me & is so kind, but he probably too has a milder form of M.E. (from his case history before he met me), where he can work, but has to rest a lot of the time at home. As he is self-employed & works very long hours at his business, it is very difficult, as he does the shopping for me & anything else that takes a certain amount of energy. We have a cleaner & a gardener to help us (privately employed).
At the moment & for a few years now, I’ve reached a sort of plateau where I can do few things some days, but pay for it by having to rest/be in bed afterwards, although I'm not bed-bound for weeks/months at a time now like I was at one time. Anything I do costs me be it physical activity or mental concentration. I don’t do anything in the evening, because I’m far too exhausted & am often in bed by 8 or 9 pm or earlier. Recently I went through a very bad relapse (after flu + two infections, antibiotics + antifungals, which both totally disagreed with me).
I became a Christian in 1983 while very ill with M.E. & undergoing a year of psychotherapy, as all my medical symptoms were classed as psychological, but I was severely depressed & I also had to grieve for the death of my father from leukaemia in 1980, when I was 18, which I had suppressed when going away to do my English Literature degree in Reading & being away from home for the first time.
My Christian faith is very important to me & I have received God’s healing on many occasions & been involved in the Healing Ministry.
I am an inveterate animal lover, who has always had cats & rabbits, though my lovely cat, Misty, recently died & I miss her dreadfully. Animals are wonderfully healing & I can’t exist without their company, so will be looking for a new kitten soon.
I am also very lucky to live inside a Country Park with two lakes, from which an abundance of wildlife overflows into our garden & on a good day I can walk out of our drive into the greenness of trees echoing with the soft lapping of water.
I have recently created & designed three websites & have also produced & designed three collections of my poetry illustrated with my paintings called *PROMISE*, *MANDALA* & *SECRETS* at Vivi*Press.
© Vivien Steels 2006 [reprinted with permission]