This is the face of ME
http://www.youtube.com/watch?v=AUPkja02uR4&feature=player_embedded
and still the government won't put money in bio research. The methods used at present such as Cognitive Behavioural Therapy only help in the management of the illness. Other countries are now putting money into research on the back of findings that a retro virus (XMRV) is the cause. This is the same virus that causes HIV and Leukemia. More than a handful of studies are coming up with the same results, including the scientist that found Hepatitis B, yet still the UK fail to get behind it. Their one trial showed nothing. Hardly surprising when they used different controls and methods to the rest of the world. Funny though, that from November 1st, there is a lifetime ban on anyone with ME/CFS giving blood. There is also the fact that World Health Organisation class it as a neurological disease and has done so since 1968. Uk Government seems to overlook this factor.
We only have to look backwards a couple of decades or so, to see that the same thing happened with MS.
and still the government won't put money in bio research. The methods used at present such as Cognitive Behavioural Therapy only help in the management of the illness. Other countries are now putting money into research on the back of findings that a retro virus (XMRV) is the cause. This is the same virus that causes HIV and Leukemia. More than a handful of studies are coming up with the same results, including the scientist that found Hepatitis B, yet still the UK fail to get behind it. Their one trial showed nothing. Hardly surprising when they used different controls and methods to the rest of the world. Funny though, that from November 1st, there is a lifetime ban on anyone with ME/CFS giving blood. There is also the fact that World Health Organisation class it as a neurological disease and has done so since 1968. Uk Government seems to overlook this factor.
We only have to look backwards a couple of decades or so, to see that the same thing happened with MS.
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My partner suffered a bout of something like ME, maybe it was ME, a few years ago, shortly after a couple of episodes of flu. Her treatment was dreadful. In spite of the fact that she was an energetic, enthusiastic person, who loved her job, the doctor(s) insisted that it must be work-related stress, or simple fatigue. At the outset, she wan't at all depressed, simply tired (and puzzled). After 6 months, when the only treatment she had been offered was a course of anti-depressants, she was beginning to think about taking them. Fontunately, she got through it, although it took another 6 months before she began to feel well again. Others aren't so lucky.
It's a very frustrating condition, and one which in the early stages is easily overlooked, because the symptoms are so commonplace 'fatigue, poor concentration and memory, anxiety etc.' and of course, everybody gets those sometimes.
It was only a few years ago, when my thyroid decided to tuck itself in and sleep forever, and I started to experience very similar symptoms, that I realised just how frustrating it can be. Forunately, in my case, my doctor took it seriously and ordered some blood tests.
I think that it is frustrating that illnesses which are less well known seem to get less funding/investigation. I think a lot of funding comes from charities also, so the illnesses which affect the majority are the more likely to be contributed to. As usual, 'we' don't seem to be doing enough to help sufferers of all illnesses. It's quite shocking that when money is eventually put aside it isn't being put to very good use!
Also, I don't know a lot about ME, but I should think that to catch any debilitating illness early and treating it before it progresses, the more beneficial it is for the patient. Possibly even halting the progression in some cases, I'm sure?
I am off work with flu at the moment, feeling sorry for myself, so the emotional side must be as delibitating as the physical on days. It's amazing how upbeat you always seem when I'm sat here tearful just because I've got a bit of a runny nose and my arms ache a bit !
My brother is fighting a losing battle at the moment with the government to put more money behind MS and the CCSVI link, which he can't seem to get tested for....very frustrating and seems more to do with money than anything else.
I feel your annoyance...All the best to you Weens x
I think the deep rooted cause is the prevailing scientific orthodoxy that the way to knowledge is to take things to pieces. Hence, science tends to be atomistic and analytical - which is good up to a point - but it also needs to look at things holistically, treat the patient as a whole person, look at a wide spectrum of causes, don't get hooked on just one approach e.g. CBT.
People who have similar/some symptoms for a few months usually have post viral fatigue, which is debilitating, as is the flu, but it is not the same as having M.E.
Here's to them getting it together as soon as they can.
For some reason it is not thought serious enough, yet it prevents hundreds of thousands of people from living fulfilling working lives.
If you think about the rise in prescriptions for statins, which are pushed hard by the drug companies and therefore by doctors and even some MPs (I seem to remember that one of them said statins should be put into food so everyone can benefit - ha!), you can see how some drugs become the medical flavour of the month because of the massive revenues associated with them.
Or am I simply hideously sceptical about how money and other incentives have affected the judgement of the medical profession?
Stephenterry, just google XMRV there is a lot of info on the net after they find the link in the Reno research facility. If that doesn't provide you with what you are looking for, try retrovirus.
Athelstone, this is just how they treated MS thirty years ago.
My lovely Minxie, thanks for your eternal support, you don't know how much it is appreciated.
Gels, I hope that the government do something about both MS and ME, I hope your brother is not having too bad a spell.
Gerry, I know you understand and you make a very valid point.
Bren, my ME friend who listens to me moan on a bad day. Thank you for your support.
Spangles and Tors, you may have a point there, I suspect there is more than an element of truth in what you say.
Thanks again to all of you for your comments and for taking the time to watch the film and read.
As a child, all illnesses had names (measles, mumps) and the doctor was confident of treatment. Nowadays, the diagnosis as often as not, is "Non-specific viral infection" or something like that and the treatment is often hit-and-miss. Perhaps there is too much empirical data and not enough pulling together and extrapolation? And I think the drug companies play a large part too, in muddying the waters. I feel your frustration.
Hugs. xxx
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