Hi James, hope you're having a good day.
Congratulations on having the brainpower to surf the web...this is unusual in my experience of ME sufferers. (It sometimes seems like I collect them...my brother-in-law, my sister, a friend of hers, strangers on ferries, most recently a friend of mine who had mono six months ago and is now often ill...)
Having chronic fatigue myself, and having had absolutely no help from the NHS here in Scotland, I can tell you a little about ME/CFS/CFIDS form a British perspective.
It's complicated, which is why I have hesitated to answer.
In short...in the UK there is a disease process which is identified as ME, which pretty much equates to Chronic Fatigue Immune Deficiency Syndrome as it is descibed in the USA. However CFIDS covers a wider range of symptoms which are considered to be a grey area in the UK, including fatigue such as mine which is basically like ME but without opportunistic infections, and which may be caused by another cause other than whatever is at the root of ME. So I have Crohn's Disease and maybe that causes CFIDS in me, but in the UK there is a lot of controversy and things are not so simple. Even now, many GPs do not believe in the existence of ME; some that do, still do not know the appropriate diagnostic procedures, and the water is muddied by the debate about whether all Chronic Fatigue is related to Post Viral Fatigue Syndrome (a UK-only term I think) or whether some or all of these fatigue disorders are psychological in origin. (Try the ME Association for the list of 14 physical diagnostic signs their doctor says can be used as definitive.)
To add to all this, the NHS refuses to fund the ME clinics that various consultants have been running off their own bat, and the ones in Scotland that have not retired are now no longer taking patients. (There were only two that I know of, I hear rumours there may be a young guy in Inverness just starting up.) There used to be an ME Centre in East Kilbride, but I believe it has now closed down, not least due to old-school doctors who saw no need for it.
So in Scotland at least there are no consultants specialising in it, therefore no patients getting diagnosed, therefore no problem visible, therefore no NHS funding....and the patients are generally too ill, or ill-informed, to fight back against the ill-conceived prejudices and studies of poorly-trained doctors.
I have heard rumours of a Harley Street specialist but couldn't find any info on the Net, ditto for Oxford.
(But I'm not bitter - just twisted ! ) To this day, 16 years after I first started suffering from unusual fatigue, I doubt if there is any emphasis put on it in my medical records, never mind an actual diagnosis.
But the good news is, the younger your doctor is, or the less keen on medicine-by-the-book he is, the more likely he is to actually be able and willing to help you.
As regards your diagnosis, the two things which the MEA doctor seemed to consider the sine qua non of having ME were nerve damage and a higher than normal frequency of opportunistic infections. There is no single definitive test - "diagnosis is by exclusion" - in other words, the more tests are carried out that rule out other disorders, the more likely it is your diagnosis is accurate.
There is certainly nothing in your list of symptoms which would rule out CFS/ME, and certainly ME quite often presents itself as largely neurological symptoms - the name ME stands for Myalgic Encephalopathy, which basically means "pains caused by a disease of the brain". If you wake up more tired than you went to sleep, feeling like you are running uphill when you are motionless, if you tire more quickly than usual, or your muscles suddenly lose strength...that's not laziness !
Predisposing factors are considered to be a very athletic, non-stop lifestyle prior to illness, and higher than usual exposure to antibiotics in the patients medical records. But not having these factors doesn't rule it out.
The treatments I have seen work all included identifying and avoiding specific foods - food intolerances are to my mind the main clue that you may have ME or something approaching it. Everyone I've ever known with this constellation of symptoms seems to find that changing diet and being careful not to do too much is what really cracks the problem of coping with it. Anti-depressants are also a favourite, as they seem to help alleviate the mental symptoms which so often accompany severe bouts. More recently I've heard that Ritalin is sometimes used in frequent tiny doses, but I don't know how successful it is.
Hope this helps....don't hesitate to ask if you need to know about coping strategies, diets etc. And please let me know if you find a consultant anywhere in the UK, or any good sources of information...I'm still looking !
Post Edited (snohare) : 12/5/2004 6:29:50 PM (GMT-7)