Diets, supplements, bedrest, pacing and painkillers, on the other hand, are among the treatments that are known to, sometimes significantly, improve the ME patient's quality of life De Veer, But that is just the beginning: they do not cure. There is no reason why ME should not be curable. We know most of what's wrong - in fact, we knew that already before the psychiatrists muddied the scene see e. Hyde, - so all it takes is good research, which of course needs funding.
Experiences of the supporters of patient organizations with health care. Hyde BM ed. Competing interests: None declared Competing interests: No competing interests. Exactly, there is no defeatism: we want to get better, we are desperate to get better. Thankfully, there are researchers digging down to the truth - the biomedical truth - slowly, but surely. It is no wonder some in the ME community are labelled as militants.
We are angry and exhausted and baffled at not being listened to. When will it end? What does it take?
I am glad if many clinicians feel a sense of defeat with regard to their interpretation of Chronic Fatigue Syndrome. I do not feel that there has been 'bullying' nor 'badgering' by people who want biomedical research into this range of diseases.
Lay nor medical. If that poweful lobby 'will not accept any role for psychological factors in the cause of this disorder' it is because we are not talking about a single disorder. Many 'unfortunate victims' have had the opportunity to experience the 'benefits of the treatments outlined by Santhouse and his colleagues' but many of these victims are still unwell.
If you recall, some of them are dead. As we are not talking about a single disease, we are unlikely to find a standard medical treatment. It is easy to see how the "strange conflation" to which Professor Broome refers would, of course, create a sense of unease in psychiatrists such as himself and his more prominent peers. Chronic fatigue may not be a terminal illness but myalgic encephalomyelitis can be.
The media generally do not portray the condition as a "progressive, paralysing, and commonly fatal illness". If people with ME had only "bed sores, chest infection and malnourishment" to contend with then the rest of the patient population would not have to endure the consequences of the stranglehold which psychiatrists have on this illness — which is at the expense of patients and despite more and more evidence showing ME to be a serious and progressive biological condition.
Any pessimism exhibited by those with this illness finds its source not in the condition itself but in the ignorance and mendacity of those who engineer scarce funding from the MRC in order to support the pretence that ME is a somatoform condition, or who publish research based on flawed diagnostic criteria. In fact those suffering the tremendous disability of severe ME are surprisingly optimistic despite the travails of having to deal with prejudice from the some parts of the medical profession and the media.
But we have long since gone past the point where a small section of psychiatrists influencing NICE can really persuade anyone that CBT and GET are serious answers to a neurological illness — we just have to wait for the psychiatrists to catch up or, more likely, be left by the wayside as real science establishes beyond doubt the pathology of this illness.
Patients and their families are increasingly aware of this policy- based evidence making which NICE and those who dominate the MRC promote based on the policies of the last generation which funds only research projects on ME which promote the psychosocial view of its aetiology . It is also heavily influenced by biased research. If one is fed a constant diet of biased research then one can expect little more than ignorance to exist.
Hardly just bed sores and chest pains! There really is a great deal of catching up to do for some sections of the medical profession with regard to ME. Perhaps the editor of the BMJ could be persuaded to attend a biomedical research conference on ME and write an informative, unbiased article about it for the readers of this journal.
Lombardi, Francis W. Pfost, Kathryn S. Hagen, Daniel L.
Peterson, Sandra K. Ruscetti, Rachel K. Silverman, and Judy A. Science [DOI: Before I became ill, I was a newly qualified teacher, with a new husband and home.
I was beautiful, vibrant and ambitious. I relied on my doctor to do what was best for me. However, I had no idea at the time that once labelled with the illness I would no longer be offered further testing or treatment other than talk therapy and other psychiatric measures. I stagger and slur, bump into things and fall down stairs. I forget where I live. I struggle to finish sentences. I shake and tremble when I push myself beyond my limit, which changes by the minute.
The Mitochondrion in Aging and Disease: Volume This is known as the CDC definition. Perhaps we might consider re-activating the brilliant scholarship of Dr. Table 1 lists disorders that should not be considered exclusionary, although they may present comorbidly with ME. Shepherd, C. Consensus groups and researchers should consider retiring the Oxford case definition because it differs from the other case definitions and is the least restrictive, probably including individuals with other overlapping conditions.
I suffer with myoclonus, ataxia, severe low blood pressure and malaise but rarely tiredness. I lie unbathed for days until there is break in the symptoms and I can tend to myself. My hair sits matted and crusted on my head; often left unwashed for weeks at a time. I would like to ask the physicians who are reading this a simple question.
How many of you are aware that M. Since further testing is discouraged, physiological proof will rarely be found. If I were to be given a simple tilt table test then you would see that my heart and circulation are damaged. But this is one of the very tests that are discouraged. POTS is very common in M. I live my life in solitude, not because I choose to but because I have been forced to by this abhorrent illness, that can be likened to an opprobrious partner.
One who decides when I can wash and dress myself, when I can read a book, when I can eat, when I can move and if I can use my legs to walk to the toilet. All I ask for is appropriate testing and treatment and a chance to continue where I got off. Nothing more, nothing less. Competing interests: No competing interests. Recent media coverage of the tragic death of Lynn Gilderdale and her mother's acquittal for attempted murder of her daughter was widely welcomed by the ME community and those who support sufferers. The reason is simple: For the first time the potential full magnitude of suffering by those severely affected was aired in public.
Controversies and uncertainties over a diagnosis of Chronic Fatigue Syndrome CFS exist largely because this artificial construct was created and is much favoured by certain psychiatrists - fatigue being the declared cardinal symptom. This stands in sharp contrast to Myalgic Encephalomyelitis ME , which has been classified as a neurolgical disease by the World Health Organisation for over 40 years currently under G The manifold neurological, immune and endocrinological manifestations and complications of ME are well documented 2,3 , linked particularly to enteroviral infections, as have cases of death due to cardiac failure, rare tumours, severe neurological complications or basic end-organ failure, apart from suicides.
Some recent studies confirming such findings have been mentioned in earlier responses. A copy of the Hyde et al encyclopaedic volume 2 was also left with Sir Kenneth and DoH staff on that occasion. Furthermore, results of 4 surveys on over patients in total were supplied to that group, which included psychiatrists who ardently advocated the benefits of Cognitive Behavioural Therapy CBT and Graded Exercise Therapy GET. Survey results showed clearly however that these two approaches were the least effective CBT and potentially most harmful GET to patients. To treat depression where it exists with common antidepressant drugs has been shown to result in potentially severe adverse reactions, without bringing about any real improvement in the underlying physiological problems these patients have.
With regard to the specific case of Lynn Gilderdale, it should be born in mind that here a vaccination as well as infections were linked to the onset of her illness which resulted in progressive serious health problems. Her condition was so severe that she was hospitalised 50 times during her 17 years' suffering, as the Panorama programme revealed. An earlier longitudinal study from the general medical literature recorded the fact that most hospital patients with post-vaccinal neuropathies had a concomitant illness 7.
OP pesticides, toxic metals etc in the aetiology of this disease is tantamount to ignoring key factors in a complex equation, in my opinion see also response from Dr Ellen Grant. Of course life-style factors like nutrition and stress also play a role. As Dr Melvin Ramsay said in his booklet 'Myalgic Encephalomyelitis and Postviral Fatigue States - The saga of the Royal Free disease' 8 , reflecting on his experiences as the Consultant Physician at that Hospital during the outbreak: "I had long harboured a suspicion that the triggering factor of ME is to be found in the immunological state of the patient and research is showing that this might be the case" p Dr Shepherd said in his contribution to a recent Times article 9 , what is needed amongst others is research into the role of the immune response to infections.
It stands to reason that an impaired or dysregulated immune system cannot deal effectively with infections, and we are all exposed to countless toxic substances in the environment and in everyday life. So can ME patients get better and what helps?
In I carried out a long-term follow-up study on patients who had earlier completed detailed questionnaires Most had adopted a combination of approaches, consisting of pacing their activities, adjusting their diets and taking various supplements; some had also availed themselves of Homoeopathy or Acupuncture. Two had regained their health mainly by allopathic therapies: one by taking Thyroxin for a non- functional thyroid gland, the other by having long-term antibiotic treatment.
In my view therefore another research area that should be explored with urgency is what has actually helped patients regain normal or near normal health, other than CBT and GET, which have had more than their share of funding often accompanied by misleading publicity. Editorial on: Santhouse A et al.
BMJ ; Hyde BM et al Editors. Excellent coverage of the history and some politics of ME By Dr.
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