I have to completely disagree with everything that Cort has written. Nothing has changed in the UK. The latest round of funding is an absolute sop to patients with ME. All of the proposed studies, except the one by Dr Julia Newton, will use the Oxford criteria. For anyone that doesn't understand, the Oxford Criteria means that depressed, anorexic, and mentally ill patients with no post exertional malaise will be selected. And worse still is that two of the studies are not even on ME patients but so called "related fatigue states".
Although the evidence that ME is physical is now overwhelming, no one knows what causes it, therefore to study other conditions because of a claimed similarity to ME is absolute balderdash, how are they similar if no one knows what ME is? This money was suppose to go towards finding out more about ME, not spending on vague fatigue like mechanisms in other conditions. This is similar to the theft of ME research funds at the CDC for pet projects, except the British like to take dishonesty to a higher level - by even being dishonest about their dishonesty. Would Lupus, MS, HIV patients get wishy washy sleep studies, grape seed extract studies (polyphenols) and the like. No they would get serious research with Rituximab and other immune therapies, and immunoglobulins, things that have been proven to work. Also if ME is so much like Sjgren syndrome that it warrants spending precious little funding designated specifically for ME, and since we know that IV immunoglobulin and Rituximab are effective treatments for severe Sjgren syndrome, why aren't ME patients allowed IV immunoglobulins and Rituximab?
Someone wrote an exceptional review of the projects which I will repost below - has anything changed... I think not, we are just getting lip service.
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Upon reading the proposed MRC research projects for ME, I was dismayed to see that only one could really be described as fitting the description of biomedical research into ME.
Given Professor Holgate's insistence that the money would be u...sed for this use only, and his apparent concern that ME research be moved forward, I cannot understand how this has happened. Below I have outlined concerns over each individual study.
1.
Identifying the biological fingerprints of fatigue - This is in actual fact a study on Sjgren syndrome which has nothing in common with ME other than that both conditions have "fatigue" in the most general sense of the word. This is the same as studying migraine and claiming to study brain tumours because both cause headaches. Fatigue is a symptom of almost every medical condition and therefore using this as an excuse to study other illnesses is not justifiable. Why not study the immune parameters (as they are going to do in this study) of ME patients? It just makes no sense.
2.
Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenols. - The same point can be made again that mitochondrial dysfunction is a symptom of many chronic illnesses and not unique to people with ME. This study is going to try and treat people using supplements such as grape seed extract. If this kind of intervention worked, all ME patients would be well by now as we have all tried grape seed extract (and wasted money on hundreds of other supplements).
3.
Can enhancing slow wave sleep SWS improve daytime function in patients with CFS? - Whilst at first glance this project may seem to be of value, again all chronic illnesses cause dysfunction of slow wave sleep, including epilepsy. Pharmaceutical measures to correct this have almost never been successful because the drugs are just too dangerous to be used long term as a symptomatic treatment.
4.
Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome. - This is possibly the most objectionable study in that again it is not looking at ME patients. The study will "follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue". In actual fact ME patients have in the past have been treated with IFN-alpha and found their fatigue improved, showing that the biological changes induced by IFN-alpha have nothing to do with the "fatigue" of ME (research by John Chia - Alpha 2a interferon significantly increased quality of life scores and natural killer cell functioning in ME/CFS patients with reduced NK cell functioning in a 1994 study. Dr. Chia reported another small early interferon study by Brook et. al. was successful as well. )
It is simply not acceptable for the money that was supposed to go towards ME research to go to a hotch potch group of vague studies that merely look at "fatigue" in a variety of conditions. What Professor Holgate and his team do not seem to appreciate is that ME is not fatigue. Until this basic point is understood, there will be no progress. The unique symptom of ME is an increase in symptoms after exercise (where "exercise" can be as little as getting dressed or drying ones hair for some people). Symptoms can range from flu like (swollen glands, sore throats, general weakness) to cardiovascular (missed heart beats, racing heart) and neurological (dizziness, blurred vision, heightened sensitivities to sound and light, and even seizures). Patients have these symptoms ALL the time, often even at rest, but will experience an increase after any activity. The specific increase of symptoms in patients with ME is measurable with the repeat two day VO2 Max stress testing. This is unique to ME, and therefore as repeated above, studies on Hepatitis C patients and Sjgren syndrome will yield no useful information. Reserach on VO2 max stress testing is now accepted in the USA as the best objective repeatable measure of incapacity - please see the following research.
http://niceguidelines.files.wordpre...ndings-with-repeat-exercise-testing-in-me.pdf
Only the Canadian Consensus Criteria and International Criteria accurately describe these symptoms of ME and therefore should be the only ones used. Not one single study in the UK has ever used this criteria. Psychiatrists who purport to study ME use the Oxford Criteria which simply describes fatigue. An illness cannot be studied unless it is accurately defined.
I cannot even get close to describing my frustration over this most recent funding announcement. The initial press release detailing this 1.6 million funding was a source of hope for many, which has now been dashed. There was hope that somebody might follow up the Norwegian findings which pointed to ME being an autoimmune condition, but this has not happened.