Saturday, February 26, 2005

CFS, Symptoms and Treatment for CFS

The following is a copy of a Health Care article published 26 February, 2005, courtesy ExpressNewsline:

“CFS is a major health and economic threat, second only to AIDS.”

That comment was made by Dr. Byron Hyde during the World’s first CFS symposium in 1990. Since then, Chronic Fatigue Syndrome has assumed almost plague-like proportions. Yet, many people still do not acknowledge it as a medical condition at all. So, is CFS a real disease? What causes it? And how can it be effectively treated?

Chronic Fatigue Syndrome is, according to Emergency Medicine, ‘a multisystem disease that affects the central nervous and immune systems and often the musculoskeleton system.’ The major symptom is a major lack of energy, where the slightest task becomes an incredibly difficult undertaking. Physical pain often results from the slightest touch. Chills, cold sweats and fever are also common. It can last for up to a year and relapses are common. Many sufferers have experienced the frustration of not having their condition recognised, even by the medical community. The average sufferer, in fact, has consulted 16 different physicians before getting a correct diagnosis. Often they are told that they were in perfect health, that they were depressed or under stress. Many, in fact, were packed off to a psychiatrist.

Yet, diagnosing CFS is no easy thing. Fatigue is an extremely common symptom. There is no medical test for CFS. They have, however, identified the following of signs and symptoms that collectively characterize the condition:

(1) Major fatigue lasting for more than 6 months that leads to at least a 50% reduction in activity.

(2) No other medical or psychiatric conditions that could cause the condition.

(3) Low-grade fever

(4) Sore throat

(5) Painful lymph nodes

(6) Muscle pain

(7) Prolonged fatigue after exercise

(8) Headaches

(9) Joint pain

(10) Sleep disturbance

(11) Forgetfulness, confusion, difficulty concentrating.

So, what can a sufferer to work their way through this painful and frustrating condition? It is important that they adjust mentally to the unpredictable nature of the condition. They must also conserve their energy to give their body time to heal. Aggressive Rest Therapy, whereby you prepare for future events by getting extra rest in advance, is helpful. Maintain a calm mental outlook. Don’t allow mental stress over your condition pull you backwards. Don’t try to explain your condition to those who don’t see it as a valid illness. Learn to pace yourself, and maintain a healthy diet and endeavour to get in a little gentle exercise. Don’t take this to the point of exertion, however. Above all, try exercise patience and a sense of humor. There is light at the end of the tunnel.

See further links and related Stories at ExpressNewsline.

Nobody is really listening to ME/CFS patients

Over the past four weeks I have, for the first time in four years, been almost free of pain but only if I continue to lay quietly 23 hours a day. This I believe is because for the first time in five years, I have managed to live within my baseline.

Installing a great dishwasher has made a huge difference. I would rate it, along with a washing machine, as the number one appliance for anyone who is chronically ill.

Also, I have stopped having daily cooks who were more trouble than they were worth causing me a lot of work and distress.

Over the past month, I have continued to be very strict about maintaining a healthy diet while not getting too involved with food anymore. A friend now very kindly shops for me and brings 2-4 weeks worth of ready-made meals from a special wholefood store that specialises in organic produce. The meals are substantial, can be easily stored in the freezer, and after defrosting can be heated in the oven on a tinfoil covered tray for 40 minutes. More on this at a later date.

Although I am still horizontal 23 hours a day, I feel I have gained 30 minutes more energy a day to use on activities like speaking on the phone, conversing with visitors more frequently, handwriting cards and organising one item to cross off my "things to do" list each day.

My ongoing project at the moment - over the past four weeks - is selecting and organising the installation of a new gas fire heater. Much biggger project than I anticipated. More on this at a later date. Just wanted to explain why I am not suffering so badly that I feel as though I am dying. Of course being in less pain spills over into the way I look, my eyes and demenour, my breathing, the sound of my voice, my attitude - all in all it must be a lot easier going for visitors or callers on the phone, which in turn makes everything seem more upbeat, normal and cheerful.

Of course I have tested it - and pushed myself to walk further around the house each day - but whenever I start going outside of my baseline (ie 15 minutes is my ceiling on mental or physical activity such as talking, walking, standing, -- for instance spending 15 minutes in the kitched trying to rustle up something and make a salad) if I go beyond ten minutes a day it ruins the whole day and maybe the next few days if I don't watch things very carefully.

Three weeks is the longest I have had feeling this way. It happened once, in January 2004. But did not last. I am determined this time not to overdo it. I am extremely curious to find out if something will be healing when I rest while not in pain - or whether I am simply learning and have all the props in place to manage to live within my baseline.

I wrote the following post on January 19, when I was feeling particularly poorly and going through a hard time and filed it in my drafts folder to look at later on.

This item was posted 2nd November 2004 at the website of the M.E. Association, UK. The title caught my eye as for me it just about sums up one of the worst aspects of this illness - and confirms, once again, that in the five years I have been struck down with M.E., not a lot has changed in the outside world when it comes to perceptions and understanding of this condition. Contrary to what my friends and family believe, there is no treatment or cure. For some reason, people just can't get their heads round the fact that nothing can be done to help. I am going through a particularly difficult time lately as it seems clear to me that my family and friends are giving up on trying to help me because I can't be helped (my words) and I do not appear to be helping myself and always say "no thank you" to whatever they suggest. Their suggestions range from wearing magnets to being excorcised, taking aromotherapy (strong scents make me feel more ill) and reflexology (made me hyper and worse). They want me to see doctors, consultants, specialists or go to hospital for treatments that they believe exists. You have to do everything you can, trying anything to get well, they say. If there are no treatments: what's the point? why put me through it when it could risk making me worse? I would rather use the energy on visiting people.

Someone else I know thinks I am ill because of my domineering mother and that it is within my gift to get well, if I wanted to - and that when I am ready to move forward, I will get well. A few other people are disappointed in me because I won't go as an inpatient in hospital and leave Ophelia: what for? there is no treatment -- and Ophelia is all I have, she would be a different cat when I return - we have been together 24/7 for 3 years, she was cruelly treated as a kitten and now is a confident cat around me. When visitors arrive here she acts timid and withdrawn. As soon as they leave, she swaggers around like queen of the castle. I can't imagine anyone else having the time and love for Ophelia, that I give. She gets a cuddle every few hours, is let out half a dozen times a day, and gets treats and playtime twice a day - we have a routine that works like clockwork. We go to sleep and awake at the same time. She knows where her bed and food and emergency tray is (she never uses it because she is in and out all day). If I am not on the couch, she comes looking for me. And she comes into my bedroom at the crack of dawn to wake me up. She has several different places to sleep and hidey holes when she hears fireworks. I have never left her alone. I cannot imagine her in the pen of a cattery. She would cry and get confused and distressed - and so would I.

What I am saying is people don't seem able to accept that some things just have to be the way they are. There is not always a fix. And chasing rainbows can be a waste, and risky. Everyone has their own way of coping. For me, at this point in time, it feels better to try the only thing that has been proven to work: complete rest for as long as it takes.

I am still not at the stage of being able to have six weeks consecutive rest. Something always crops up. So I am being proactive now, and getting certain household tasks and maintenance taken care of within the space of weeks and months, to make way for the rest regime I am planning for Spring.

By Summer I expect to be able to lay on the balcony in the sun - and to take a walk down to the beach. I cannot recall when I last did those two things. Certainly I have had no sun on my body for two years. The last time I walked 50 yards to the beach - and 50 yards back was probably about four years ago.

If by this time next year none of it has worked, I shall have re-think and maybe even save the money to have a private specialist come visit me. I will listen to what they have to say because by then I will have tried everything that is within my power to try. Getting household and food organised has been the biggest hurdle that has taken four years to overcome. My extra new food freezer and dishwasher have made a huge difference.

Unless unusual new symptoms flare up, I don't see any point in wasting energy and life bothering the doctor or spending months and years experimenting with pills, potions and anti depressants. Who knows what they do to the body. The ME patients I've spoken to who are severely affected affected for more than 10 years have tried all of the things I have mentioned, none of them have recovered at all. Their lives, what was left of them, have been sucked out of them by regular doctors appointments, visiting specialists, acupuncturaists, herablists and trials with all sorts of other things. One sufferer told me a big thing 15 years ago everyone tried was taking freezing cold baths. In the olden days there were experiments with polio patients, putting boiled wool on the backs of their legs to get them to move their muscles - the wool was so hot it blistered their skin. Of course, it didn't work.

Having said all of that, if a whole team of doctors, nurses and specialists turned up here, I would not object to a single thing and would go along with everything they say. The thing is what I cannot do, is organise all of that for myself. It is just too physically and mentally demanding to organise. No matter how hard I'd - and I have had a reputation for moving mountains - I cannot manage it all by myself. I cannot organise my own healthcare - if I could, I would not be so ill or need looking after. People just don't seem able to grasp that it takes everything I have just to manage the basics of each day - just getting through the day and keeping clean, fed and watered - along with Ophelia and a few plants. Something like Christmas, is too much to fit in on top of getting through the day, which is why I experimented with letting Christmas pass me by this year. I did not start ordering cards and gifts in summer, or start writing/wrapping in September to get them ready/posted by Dec 6. It was too depressing though. I shan't be doing that again. If it sets me back til Feb, so be it.
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An editorial written by Dr Peter White entitled 'What causes chronic fatigue syndrome?' appeared in the British Medical Journal on 23 October. Dr Charles Shepherd, medical adviser to The ME Association, has submitted the following MEA response to the BMJ, asking it to be considered for publication:

Earlier this year The ME Association organised a petition calling for urgent government-funded research into the physical causes of ME/CFS. Over 28,000 people signed the petition, which was later presented to the Prime Minister. The front cover of our current magazine depicts volunteers climbing up Ben Nevis to raise money for ME/CFS research. Such is the frustration of people with ME/CFS who do not believe that their views are being listened to by the medical establishment.

So an editorial in the British Medical Journal (1) reviewing the possible causes of ME/CFS should be good news. But is it?

Whilst many doctors support the idea of a disease model involving predisposing, precipitating and perpetuating factors, Peter White's editorial provides a highly selective review of the evidence so far. Crucially, it fails to offer any innovative suggestions as to how this model could be used to gain a better understanding of the underlying physical causes of ME/CFS and so develop more effective forms of treatments. Instead, all that is offered are two very familiar solutions: cognitive behaviour therapy (CBT) and graded exercise therapy (GET). And although these approaches may provide some benefit to some people with chronic fatigue, they are of no value at all, or may even be counter-productive, to others who come under the umbrella of ME/CFS.

The medical profession has only itself to blame for the awful mess that currently surrounds ME/CFS. It has created an illness that covers a wide variety of fatigue state clinical presentations, with or without psychiatric co-morbidity, and almost certainly an equally diverse range of possible pathological and physiological explanations. Doctors who deal with patients suffering from unexplained abdominal pain, arthralgia or headaches do not work on the basis that they all have the same pathoaetiology and will therefore respond to the same form of treatment. So why apply this form of flawed logic to ME/CFS?

And it should come as no surprise to find patients expressing deep frustration when they are told that while over £4 million is currently being spent on government-funded research into ME/CFS, this is all going on yet more studies into behavioural interventions, with nothing whatsoever going to underlying causation. There are numerous areas of research that could and should be pursued: in particular the need to look at mechanisms involved in the production of debilitating fatigue in conditions such as multiple sclerosis, primary biliary cirrhosis and ME/CFS, where it cannot simply be explained as being due to deconditioning.

What we need is thought-provoking research which doesn't take the simplistic view that ME/CFS essentially comprises of abnormal illness beliefs, abnormal illness behaviour, and the consequences of inactivity. The World Health Organisation now classifies both ME and CFS as neurological disorders in section G93.3 of their International Classification of Diseases (ICD10). The UK government agrees with this classification. So let's have a look at the neurology of ME/CFS for a change - instead of pouring yet more money into the bottomless pit of psychology.


1 White P. What causes chronic fatigue syndrome? BMJ 2004; 329: 928 - 929 (23 October).

Dr Charles Shepherd, Medical Adviser, ME Association, 4 Top Angel, Buckingham MK18 1TH, England, UK.

Conflict of interest: Physician whose ME was precipitated by chickenpox encephalitis and who used to be very physically active as a child as well as prior to developing this illness.

General CFS Research:  Factors influencing the diagnosis of CFS

Someone recently told me I had it within my gift to get well. Incredulous, I asked: "Do you mean to say, that I could get well if I wanted to?" The person replied: "Yes, when you are ready to move forward, you will start to get well."

Someone else, an avid church goer, said - when I described my symptoms - it sounded as though I was possessed - that the attacks are like someone - like the devil - attacking me - and so she would pray for me to be released.

Another person, when I asking how I felt, listened patiently to my symptoms and responded by saying it's probably my domineering mother that's made me the way I am ... that everyone gets a bit tired - we all get aches and pains as we get older ... and after two years of being housebound, that being on the couch is so cosy and nice, the big bad world must be too frightening to venture out into ...

Those were some quotes from people that have visited me here over the last three months. One of which has known me for 35 years. Here is a copy of an article on CFS at Remedyfind by Kate Duprey (the first few lines made me smile) that I am posting here for future reference. The article is followed by other snippets from the same website. Here's what Kate says:

Graded exercise: Depends on whether you are British or not ;-)

Want to start a riot? Just toss the value-laden phrase "graded exercise therapy (GET)" into a room full of people with biological disorders, say CFS/ME or Fibromyalgia (FMS).

For those of you who have puzzled looks on your faces, let's start at the beginning. After all, the widespread generalization is that exercise is good for every single body, just like dairy products, right? What it really comes down to though is that there are two nearly diametrically opposed hypotheses regarding the cause of CFS/ME/FMS. One theory is that, at their core, the conditions are psychiatric conditions which are caused by disordered thinking. The other theory is that the conditions are due to a disrupted central nervous system (CNS) and/or adverse biochemical reactions.

The primary problem with the "psychiatric" theory is that if a biological and medical explanation exists for symptoms, however vague, a patient cannot be classified as having a somatic or "hysterical" psychiatric disorder. However, that little technicality has not deterred UK psychiatrists Drs. Simon Wessely, Michael C. Sharpe and colleagues. Since the late 1980s these men and their colleagues have heavily promoted the opinion that biological disorders, such as Fibromyalgia, Chronic Fatigue Syndrome (CFS/ME) and Irritable Bowel Syndrome should be combined into a single psychiatric disorder called "neurasthenia" or "women's hysteria".

A late 1880s social construct, the theory of neurasthenia or hysteria was based in part on the increasing education of women. However, by the 1930s this theory was no longer fashionable. Even Freud abandoned the concept. In 1980, neurasthenia, was no longer considered valid and was dropped from the psychiatrist's bible, the Diagnostic Standards Manual IV. Although psychiatrists such as Drs. Wessely and Sharpe are trying to revive the moribund neurasthenia model, they now also use the phrase "Functional Somatic Syndrome". To understand why GET and Cognitive Behavioral Therapy (CBT) are the two primary treatments proposed by those promoting the psychiatric theory of CFS/ME/FMS you need to understand this underlying concept - CBT and GET are treatments designed by psychiatrists for psychiatric patients.

Enter volumes of psychiatric research studies insisting that cognitive behavioral therapy (CBT), a change in belief systems is the best way to "treat" these so-called somatic disorders. In order to prove this they cover up unsupportive data and even refuse to identify test subjects using standard biomedical protocols. As microbiologist Dr. Darrell Ho-Yen notes, Michael Sharpe and colleagues conclude that patients gain benefit from cognitive behavior therapy because it reduces (patient) beliefs that illness is mainly physical, the cause is a virus, the illness is myalgic encephalomyelitis, and exercise should be avoided. The same psychiatrists also strongly advise that no physical testing be done.

Although cognitive behavioral therapy, as well as many other valid forms of mental health therapies, can help people develop valuable resilience and coping skills, there is no evidence any of them cure organic illness. It is possible that the late philosopher Susan Sontag captured the attitude best when she noted, "Theories that diseases [illnesses] are caused by mental states...are always an index of how much is not understood about the physical terrain of a disease".

Just my personal opinion, but if people could eliminate organic illness by simply changing their attitude, graveyard visitation could be drastically reduced and there's nothing the plastic flower lobby could do about it. Based on the CBT model of "change your attitude and get well", graded exercise therapy (GET), is a physiological therapy, which does not take into account biophysical condition or responses. The point is simply to force patients into joining the "exercise is good for everybody club".

All evidence to the contrary is ignored. But, organic illnesses can be neither brainwashed away nor manipulated into nonexistence. The neuro-endocrine-immune disorder CFS/ME is a life altering, debilitating chronic illness like Fibromyalgia: not a case of the sniffles - and a box of tissues called graded exercise therapy may not do ya.

The World Health Organization (WHO) specifically designates ME/CFS exclusively as a neurological (CNS) disorder. Insurance behemoth Blue Cross/Blue shield does the same, listing Fibromyalgia exclusively under rheumatology. And biomedical research strongly suggests that in patients with neurological disorders such as ME/CFS, exercise can worsen patients since post-exertional fatigue is one of the well-defined hallmark symptoms in the neurological disorder ME/CFS.

For both fibromyalgia and ME/CFS, biomedical answers on exercise range from none to mild aerobic exercise. The key concept all biomedical researchers agree on is that rest periods are essential and if the exercise makes you worse, stop and at the very least, back down a few notches. All emphasize that decisions about exercise must be made within the context of illness severity and physical response.

A British questionnaire regarding CFS/ME management practices tabulated results from a total of 2,338 respondents. The results showed that 1,214 of questionnaire respondents had tried graded exercise. Of these, 417 found it to be helpful, 197 reported no change and 610 (50%) indicated that it made their condition worse. The article also notes that among respondents, this was the highest negative rating of any of the pharmacological, non-pharmacological and alternate approaches of management covered in the questionnaire. Study coordinators believe these statements may help explain the high drop out rates noted in some of these programs.

All of this is the long way of getting to my point. What works for you may depend on your unique chemical makeup and situation. Whether I'm evaluating toe nail clippers or the management of CFS/ME, I always try to start with common sense - which is not as common as the name suggests. As such, is it in my best interest, even though I have been diagnosed with fibromyalgia, to be dancing the "Achy Breaky Heart?"

Since I have been medically diagnosed with both ME/CFS and Fibromyalgia I tend toward the lower end of the spectrum. I try to start with gentle stretching in my nice toasty warm bed. How active a day I have depends on the whim of these darned diseases not mine. I know in my own situation - just attempting to keep up with social and Hazmat expectations - housework and yard work now take everything I have and frequently more. Given a choice between wearing dirty clothes and doing jumping jacks, I'll choose to push my activity envelope by doing laundry if at all possible. And in the world of ME/CFS, what is possible some days is utterly impossible on others - and that is a biological fact that each of us lives on a daily basis.

Bottom line: we, and only we, are the ones who have to live with the results of choices made. Ultimately your body, not some research study or doctor who isn't you, will tell you what it can and cannot do at any given moment in time.
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1. General Chronic Fatigue Syndrome Research: Factors influencing the diagnosis of CFS November 2004. This study by the U.S. Centers for Disease Control and Prevention used data from a population-based study of CFS to identify factors associated with receiving a CFS diagnosis. Wichita, Kan, residents were screened by random-digit dialing. Eligible individuals completed a telephone interview. Respondents meeting CFS criteria were invited for a clinical evaluation to confirm CFS.

The study confirmed CFS in 90 subjects; 16% had been previously diagnosed as having CFS. Persons in the middle- vs the higher-income group were more likely to have been diagnosed as having CFS, as were those with sudden vs gradual fatigue onset, those reporting tender lymph nodes, and those reporting a sore throat. The study concludes, "Most cases of CFS in the population are unrecognized by the medical community... Most of what is believed about chronic fatigue syndrome (CFS) is based on clinic-based studies. These studies may not reflect CFS cases in the general population."
Read this article  

2. Self-Care Treatments:  Exercise: Graded Exercise Therapy
Graded Exercise Therapy involves progressive scheduling of activities starting with low effort physical and social tasks and increasing to more demanding endeavors as tolerance to exertion improves.

In the last year, several studies have been published in the British Medical Journal which have concluded that a program of graded aerobic exercise is beneficial for CFS patients. The conclusions reached by these studies have sparked a passionate debate in the CFS community. Many have questioned the methodologies of the studies, in particular the selection of the participating patients. Rather than using the more restrictive U.S. Centers for Disease Control (CDC) criteria for diagnosing CFS patients, the U.K. studies used the "Oxford definition." This definition requires only 3 months of fatigue (as opposed to the CDC's 6 months), and no additional symptoms (the CDC requires the presence of at least 4 additional symptoms).

More fundamentally, the debate has also revealed some basic differences in how the international medical community is approaching CFS. These graded exercise studies, along with others which focus on the benefits of Cognitive Behavioral Therapy (CBT) as a means of changing limiting thought patterns, seem to reveal a British focus on behavioral therapies as the most promising treatments for CFS. In contrast, U.S. research has tended to focus on therapies which attempt to remedy dysfunctions of the immune and neuroendocrine systems.

Like everything else about this complex ailment, which approach is more likely to produce long-term benefits for CFS/M.E. patients is, of course, a topic of lively debate.
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Jaomi, Poole, United Kingdom
Personal Bio:

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 fianc'e. I live with my fianc'e, 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.

My hopes for the future include health for myself and those I care about. I would love to be well enough to get married and maybe have a family of my own. I'm unsure of what career I would like when well, but my current thinking is towards social work or something similar.

I'm not using any specific treatments at the moment but have tried many. None have been too successful. Some have worked for a short time, others have added problems and some have even made my situation worse. I hope to be able to rate some of the treatments I have tried so that others can be more informed than I was when embarking on such treatments.

I took part in graded exercise for several months as part of combined therapy with CBT. i found that no matter how small the starting amout of exercise, i got worse. it made joint and muscle pains worse and physical fatigue went off the scale. i was also mentally drained. i would say this treatment is useless and best avoided.
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Ruth, Dublin, Ireland
Personal Bio:

Until I was 15, I was a relatively healthy kid, mad about sport. Then I got a severe throat infection, which flattened me for about 8 weeks, leaving me with a deadening fatigue, all my muscles were very painful and weak; I had intense headaches and blurred vision, difficulty breathing, dizziness, hypersensitivity to light and noise. My short-term memory left me, and I kept choosing the wrong words. At this point I was sleeping for about 16 hours a day. Then I began to improve, and was just grateful I was coming out of what myself and my doctor had put down to a particularly nasty virus. I'd say I reached about 65% of my former health, and resumed sport, and the usual social life of a 15 year old.

However, within a couple of months, I was unfortunately, deteriorating. I pushed myself harder everyday just to keep going, but within 2 years I was in a wheelchair and then bed bound. My symptoms at this point were very severe, my muscle strength was almost non existent, I couldn't lift my head off the pillow for the dizziness, there were times I could hardly speak, breath or swallow and the fatigue was so bad it felt like paralysis. Then over the next few years I improved on two occasions to, I'd say between 5% and 10% of my former health, which was great. It meant I could go for short walks, and spend some time with friends. I managed to convince myself I was going to make a complete recovery, but it never happened and I have been pretty much bed bound again for the past 6 1/2 years.

I can never be sure, but I would guess that because I was so excited about the prospect of recovering, I tried to do too much too soon, and when I started to relapse I didn't want to admit it was happening, so I continued to try to increase my activity, and that this is why I am so severely affected now.

Over the years I have met kind doctors who have taken time to educate themselves about M.E; however I, like so many others, have had to endure ignorance and the "God complex" of other doctors, something which is very unfair considering how difficult this illness already makes our lives.

M.E has meant that for almost half of my life my quality of life has been very poor, I have not done all the normal things like finishing school, going to college, starting a career, and with no one proven effective treatment it can sometimes become a little disheartening, which is why a site like Remedyfind is wonderful. It allows people to take some control, enabling us to learn from the experience of others. I look forward to checking out what treatments others have found beneficial, and offering my opinion on things which I try.

Cheers, Ruth

Graded Exercise - The worst thing for M.E
Date: 11/1/2004

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.

World expert in the disease Lupus is Dr Graham Hughes at St Thomas' Hospital, London

The following is a copy of an article at Surrey Online news Feb 24 2005 that I am posting here as it points out:
The lupus unit is headed by world expert in the disease, Dr Graham Hughes, at St Thomas' Hospital, in London. Research into the causes of Lupus is 100 per cent funded by voluntary contributions and gets no Government or NHS funding. Angie Davidson is marketing director of St Thomas' Lupus Trust and is delighted that Martin Burton is so involved in raising awareness of the disease.
Adventurer Martin Burton caught the travel bug at an early age and has travelled the world to exotic places. Then a chance meeting with a seriously ill woman in a wheelchair made his latest trip to Antarctica all the more special. DAVID JOHNS reports:

IT STARTED when Martin Burton was standing outside a Reigate school with his wife when she pointed out a woman in a wheelchair who was suffering from a debilitating disease called lupus.

Many people have heard of lupus but few could tell you exactly what it is. Yet it is recognised as a common illness of modern times.

It is a disease in which the immune system becomes overactive and it can affect any organ of the body. Because the symptoms can be so diverse, including for example severe fatigue, rashes, allergies, depression and kidney failure, it is called the "great mimic".

A year later Martin saw the same woman. She had fully recovered and told him she was supporting the St Thomas' Lupus Trust - a charity organisation supported by independent donations and set up to help sufferers of the disease.

Martin, 51, who is married with two children and lives at Sidlow, near Reigate, was so impressed with the work they do that he became a trustee and embarked upon a fundraising venture.

He said: "Over the years I have done various travels and never combined any of my trips with the charity.

"I had planned a trip to Antarctica to follow in the footsteps of Scott of the Antarctic, and decided to dedicate the trip to the charity.

"It was not really a publicity-sponsored effort - it was all personal donations from a few companies and friends."

While planning for his 600-mile trek by ski, kite and wind sail from the South Pole across frozen land to reach the nearest sea ice in the Hercules Inlet, someone suggested he write a book about his trip.

"I agreed. I thought it would make a good story. I committed myself to writing the book with the idea of giving all the proceeds to the Lupus Trust."

Martin's adventures in getting from the South Pole to the Hercules inlet make fascinating reading. Called An English Amateur in Antarctica it is a daily record of his team's slog across the ice, complete with all the frustrations, tensions and elation that he says are all part of life on the ice-fields.

Martin, who runs a financial services company, is modest about his achievement and prefers to talk about the lupus charity he supports.

"What the book is doing is widening the awareness of the disease," he said. "All ages can be affected, but the commonest sufferers are women aged between 15 and 45.

"It was once thought of as untreatable. But this is now not the case because research into the cause and treatment of lupus over the last 10 years is bringing rewards."

The lupus unit is headed by world expert in the disease, Dr Graham Hughes, at St Thomas' Hospital, in London.

Research into its causes is 100 per cent funded by voluntary contributions and gets no Government or NHS funding.

Angie Davidson is marketing director of St Thomas' Lupus Trust and is delighted that Martin Burton is so involved in raising awareness of the disease.

She said: "Lupus is more common than some forms of leukaemia or MS and 90 per cent of suffers are women.

"The symptoms are that people feel extremely exhausted, they have aching joints, headaches and depression.

"The trouble is that GPs are not recognising the symptoms and put them down to 'women's problems, hormones or stress'.

"They often misdiagnose it as ME or chronic fatigue syndrome or some vague illness.

"The trouble is that lupus mimics other diseases. It's actually called the mimic dis-ease.

"It is very debilitating and needs more understanding. The trust is embarking on a leaflet campaign to make GPs throughout the country more aware of its symptoms. If they spot it early it can be treated and they can save patients years of suffering."

The St Thomas' Lupus Trust website is on

For more information about the trust call Angie Davidson on 020 7188 3562.

*An English Amateur in Antarctica is priced at £19.95 and is available from The Ancient House bookshop, Bell Street, Reigate.
Martin's antarctic adventure is a bonus for lupus sufferers