A patient's journey with myalgic encephalomyelitis
BMJ 2005; 330 doi: https://doi.org/10.1136/bmj.330.7492.648 (Published 17 March 2005) Cite this as: BMJ 2005;330:648
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I think Angie will find that one of the main reasons health professionals "blame" the sufferer of ME/CFS/PVS rather than the cause of that suffering is because much if not most of that suffering is caused iatrogenically or through man-made environmentally discharged substances. There is little enthusiasm in the chemical and medical industries for admitting that prevention is in their hands, how else will one identify and remove dangers leading to what is largely an epidemic of multiple chemical damage and sensitivity, ionising and non-ionising radiation damage and sensitivity, antibiotic and vaccine damage and sensitivity, for example?
I witness this in my practice daily as the path to cure is the identification and removal (wherever possible) of offending substances as those itemised above, effective treatments to restore bodily functions and integrity, and education about how the condition originated and how to avoid recurrence.
Regards
John H.
Competing interests: None declared
Competing interests: No competing interests
Graham Hutt's history and symptoms are in many respects simular to my own. I have a conditiion called Upper Airway Resistance Syndrome (UARS). It is akin to Obstructive Sleep Apnea (OSA) except instead of complete blockege of the airway during sleep there is a severe restriction of the upper airway not unlike trying to inhale through a straw. The condition can be more serious than OSA because of the repeated abnormally negative pressures generated in the chest and it's infuence on the heart. The symptoms are unlike those of OSA where there is excessive daytime sleepiness. The UARS patient feels washed out, exausted, has headache, difficulty concentrating, and many other symptoms very much like those discribed Dr. Hutt. The diagnosis is made by the Polysomnogram (PSG). The study should employ an esophageal pressure monitor ideally because without it the diagnosis can be missed. The treatments are the same as those for OSA, but generally not as effective. The "gold standard" is a tracheostomy, i.e. when all else fails a tracheostomy will alleviate the problem. Many of the symptoms describrd by patients with ME are simular to those of patients with UARS and/or OSA (they may coexist). A closer look with a PSG might be in order for some of these patients.
Competing interests: None declared
Competing interests: No competing interests
Where are the good samaritans? Once apon a time there was a good chance of being seem by a caring docter Once apon a time the patient was never disbelieved, but understood Once apon a time patients would never question a docters motives. It really does not help any patient to be disbelieved,it harms them. This is insulting, whatever the diagnosis of illness
Once again the BMJ is leading the way, with the true facts of daily living with M.E. with balanced, informed unbiased reporting of the facts from people who are educated about M.E.
Dr Charles Shepherd M.E.Association (MEA) Medical advisor for many years, described fully the true nature of M.E. in his book "Living with M.E. in 1994" and revised in 1999 This Leading ME Specialist advisor has published 1000`s of papers on M.E. and is much respected all over the world, despite this speciality his advice is rarely sought by the people who are allocating, the funding of services for people with M.E. (PWME) There are two groups working on a very tight budget, with no grants from official sources, investigating and getting papers published, confirming,links to physical causes for M.E. as the Canadian Clinical Guidelines have shown the way forward for this neurological disorder!
M.E.R.G.E is one CFS Research Foundation is another.
Some very high profile individuals,with the most to gain personally, have taken over the medical profession, the goverment, the Dept of Work and pensions, (DWP) Dept of Health (DOH) and the MRC. abusing their positions, by continually consulting the psychiatrists, about M.E. and, excluding all positive evidence, or consulting with worldwide scientists and experts. When will they stop blaming us for having M.E. ? (CMO Report 2002) This has been reflected very publicly, by most of the professionals involved with planning the spending of £8.5 million which the goverment, promised, would only be spent:- (Specifically for providing new services for M.E. where none exist, Educationg the medical profession and support services about M.E.) In reality these funds have been highjacked by psychiatrists, with financial inducements from nsurance and rugs companies, with their shortsighted, blinkered, psychological... "models of care" being soley based CBT (Cognitive Behavior Therapy, GET (Graded Exersize Therapy) and Pacing which is only a hotpotch of get up and go, for those who can, and not those who cannot?
These "models of care" have proved to be unhelpfull and potentially harmfull. these facts have been reported for many years. Patients their carers and families are very concerned that since the Chief Medical Officers report (CMO 2002) the basis of research commissioned by the MRC, to date, focuses on those which are primarily used for people with psychologically- based conditions. These very same vested interest, individuals, are planning on, drugging our children with unproven adult drugs, despite doing no research into the physical cause of long term absence from school as a result of M.E.
Psychologising M.E,. into a compartment that it does not fit, has resulted in relapses, worsening of the condition, even disability on a scale previously not experianced.(25%Report 2002/3/4/) I have seen at first hand, up close and very personal, exactley what lack of education, by professionals, abuse, insults, lack of medical care, and welfare benefits, can do to a child with M.E. Carly Barry is dead RH is dead.. how many more?
It`s time to "Get Physical with M.E." we need funding for biomedical research into this serious neurological illness, which is righfully coded under G.93.3 ICD 10 in the World Health Organisation WHO clinical guide
I am not looking for a miracle cure. l am not looking for someone to give me my old life back, what l am looking for is understanding compassion and good old fashioned respect! where there is NONE! most of all Believe me, when l say l am physically ill
Angie Flack
Competing interests: MEA Director/Trustee
Competing interests: No competing interests
I became chronically ill in May 2001 with what felt like something tightening my tissues as it travelled through my body. It had started in the right side of my throat and gone progressively down the right side of my body. I had a severe bout of constipation as part of this picture and at that time experienced a surge of pressure up my spine and into the base of my skull. It resulted in my spinal muscles becoming stuck and a feeling that my brain was swelling. I also started to develop some very strange symptoms which included muscle twitching, odd tingling, numbness, heart flutters and squeezing sensations in my chest, being jerked awake at night when sleeping on my back, breathing problems, stiffness in hands and feet; a definite feeling that something had invaded my body and brain. (Prior to becoming ill I'd had a funny dry feeling in my throat for several years that was never diagnosed as being anything of significance. I now believe whatever was there exploded into a body-wide condition under the stress of my father's death.)
For the next year I relentlessly visited doctors, specialists and physical therapists in an attempt to find out what was wrong with me and treat the symptoms. All tests being done came back negative and I was beginning to be labelled as a psychiatric case, especially when I recounted how my illness had progressed. As soon as I mentioned that something was in my tissues their faces would glaze over and I would be prescribed antidepressants. This situation lasted for 3 years with me getting sicker and sicker. The only evidence in my bloodwork was that my neutrophils and white cells were consistently up. Doctors dismissed this as being due to a cold or stress.
By October 2003 I was not in a good place at all and had a myriad of symptoms which had forced me to give up work. I was now experiencing severe brain fog, scary breathing problems, intermittent numbness in my legs, severe mucle constriction in my back and had also two seizure -like episodes. I was getting very frightened as I was being told it was all in my head with no hope of anyone being able to help me..
Through my own research on the Net I concluded that I must have a chronic illness such as fibromyalgia, ME/CFS, or MS with arthritic symptoms too. My tests, bar the raised neutrophils and white cells, were still negative. I had seen neurologists and rheumatologists, had lung x-rays, MRIs and countless blood tests. The closest I got to a diagnosis was from a rheumatologist who said it was probably a fibromyalgia-like syndrome.
Fortunately I came across a place in Melbourne (Australia) where they offered hyperbaric oxygen to treat neurovascular conditions and chronic illness such as ME/CFS, (which they believe are caused by intracellular infections). I made an appointment and was so excited and relieved to speak to people who understood what I was going through. The GP there concluded that I must be fighting something with my raised neutrophils and white cells being raised for so long so they ran a battery of tests no other doctors had run and found evidence of past infections of rickettsia; chlamydia penumonia and herpes. I was put on doxyxycline and started hyperbaric oxygen (HBO). Immediately I started to feel better. My neck muscles started to soften, my breathing started to get better and my nervous system symptoms started to abate. What a relief.
To cut a long story short I am still receiving HBO and am still on antibiotics and am doing so much better. At first I was put on daily dosing with combination antibiotics and weekly HBO; a year of this treatment allowed me to get well enough to return to part time work. Now my antibiotics are being pulse dosed 3 times a week and I still go to weekly HBO sessions. My therapy is now more in line with Dr Brown's antibiotic protocoI for arthritis. I do believe I will eventually get rid of all my symptoms but accept it is probably going to take a good bit of time yet. I look so much better now and am able to look after myself again. I am getting my life back.
I suggest the following websites as a good initial source of information on treatment that might help. Finding doctors willing to treat in this manner is probably one of the most difficult things but they are out there. While my experiece with the medical profession has been primarily in Australia, I was in the UK for 6 months last year and found HBO easy to get through the MS charity centres and can supply names of 2 doctors willing to prescribe long-term antibiotics for these chronic illness states.
www.roadback.org
www.spinalreahab.com.au
If anyone wants to converse with me direclty I can be contacted via email on geduguid@bigpond.net.au
Competing interests: None declared
Competing interests: No competing interests
Living with ME
The article on ME highlighted several aspects of the illness which fingered a note in my experience.
Following medical discharge from the RN in 1978 after four years with a debilitating illness which went undiagnosed (and which was considered psychological though without any supporting psychiatric evidence), I was again admitted to hospital after a complete physical collapse ten years later in 1988. Positive results were obtained for several serious illnesses including MS and myasthenia gravis after muscle biopsies and other tests. The possibility of having them all was remote indeed and confusing. Hence my referral to Guys Hospital. It was neurologist Professor Graham Hughes who finally made the diagnosis of ME, which he preferred to call post viral fatigue syndrome.
His advice, was that although there was no treatment available, total rest for several months was a good start. He conceded, however, that my personality made this unlikely. He advised that since I already had been incapacitated by the illness on several occasions over more than a six year period, it was unlikely that I would ever be free of the symptoms. “Listen to your body and rest when you need to rest” was his most memorable advice. Since my previous strategy was a fruitless attempt to fight the illness by physical activity, this was news indeed and, along with actually having a diagnosis at last, was the key factor in learning to cope with ME.
Inability to lead a normal life.
There were (and remain) severe limitations on a normal life, including the
fact that whilst some days I could do a full days work, on others I simply
had to return to rest soon after getting out of it. This led to me having
my own business and working from home, enabling me to rest when I felt
unable to work.
I used the time when I was unable to work physically to study and later achieved a PhD in medical anthropology and a degree in psychology. My employment now is as a consultant working in the field of refugee and minority populations to a charitable organisation. I am able to maintain the job only by working strange and long hours when the going is good, knowing that there are times when I have no energy or severe symptoms and have no option but to rest, sometimes for several days.
This pattern has changed little over the past 30 years, apart from two periods with symptoms so severe when I was totally incapacitated. During one of these relapses – which lasted almost a year - I could not support my head for more than a few minutes at a time – and then only with severe neck pain and could not could not walk from my front door to the sitting room without resting.
Some of the psychological features were caused by my refusal to take to my bed, preferring instead to prop myself up in the living room or out in the sun on my terrace where I could work in short bursts on my laptop computer. When totally relaxed and propped correctly the symptoms were almost absent. Well meaning friends commented on how good I looked, inducing a feeling of hypochondria and lack of self worth.
Most of the symptoms are observable to a greater or lesser extend
every day. These include:
Hypersensitivity to light, certain sound frequencies and touch.
Muscle pains, particularly in my neck, shoulders and arms.
A background headache which sometimes becomes severe, usually disappearing
suddenly in late evenings.
Very lucid dreams
Muscle tics and spasms
Transient ischaemic attacks
Speech difficulties: being able to think sentences, but unable to
articulate them.
Eating problems – biting my tongue.
Diplopia and ptosis
After 30 years with the illness which I manage myself, I would be interested in experimenting any current treatments available.
Graham Hutt. PhD.
Competing interests: None declared
Competing interests: No competing interests
A patient's journey with myalgic encephalomyelitis
Editor-It has always amazed me that ME was regarded by some physicians as a psychological disorder confronting them with mental disturbances such as depression, disturbances of sleep and reactions commonly desribed as hysterical. Outbreaks of encephalomyelitis in 1955 at the Royal Free Hospital and in Newcastle in 1961 for which no definite cause could be found, still hang over the aetiology of this unusual disorder.
There are a number of neurological entities which bear a close resemblence to benign,myalgic encephalomyelitis. They are Guillain-Barre Syndrome, Landry's Paralysis, acute postinfective polyneuritis and possibly even polymyalgia rheumatica,though the latter condition appears to be related more to a giant cell temporal arteritis for which also no definite cause is known.
Humoral as well as cellural immune processes appear to affect these conditions, and treatment based on this scientific assumption have been found to be mildly effective in some cases.
Eric Frankel
efrankel@doctors.org.u
BMJ 2005;330:648-5
Competing interests: None declared
Competing interests: No competing interests