Note: As I can’t, physically, cope with two blogs, I have shut down my original, ME/CFS-related blog and redirected it here. For that reason, there will, increasingly, be ME/CFS-specific items posted here, of which this is the first.
For anyone interested, the last four year’s worth of posts can be found here.
In Scotland, Lothian NHS has been accused, by Edinburgh MESH (MESH = ME Self Help, for those readers outside the ME community), of sandbagging over a report into ME/CFS care in the area. You can download a copy of the report from the Edinburgh MESH website, here.
OK, it’s clear from the date of the report (May 8 2008), that there’s been an unacceptable delay, but as the wheels of the NHS grind exceedingly slowly at the best of times, it may not be anything sinister. No excuse though.
Having had a read through the report I don’t see that the Lothian experience is substantively different to that elsewhere in the UK. With few exceptions, health care professionals couldn’t give a shit about ME, and a great many still refuse to accept that it’s a genuine illness. One reason why, after I got a diagnosis (which took 10 years of sheer purgatory), I very rarely went to my doctor with it. There was no point, as I quickly learned.
What I did do, though, was present with the individual symptoms (without mentioning ME), when I had to, rather than just pitch up and complain that my ME was getting worse, and that’s a far more effective tactic when it comes to getting treatment.
After all, there’s no remedy for ME (yes, I know some people offer cures – they’re quacks – talking about it, changing the way you think about it, or having a massage, will NEVER cure someone who genuinely** has ME/CFS!), so getting the symptoms treated is probably all one can hope for anyway. Not mentioning ME also avoids the automatic switch-off (or confrontation, in my case – I don’t suffer indifference, or fools, gladly!), that almost inevitably follows.
Mind you, as there’s little or nothing that can be done for ME, even if they’re willing to, is it any surprise there’s a lack of interest (I’m not saying it’s acceptable, just understandable)? Doctors, especially, don’t like patients for whom they can do nothing and, in my experience, tend to resent the patient rather than the illness. That’s because the possession of a medical degree does nothing to prevent a person being a total fuckwit!
**NB: There is no diagnostic test for ME/CFS – diagnosis is based on the symptoms and on the patient’s medical history. It follows, then, that some diagnoses are bound to be wrong, and it’s the false positives, I believe, that are responsible for the cures claimed by the quacks who infest the fringes of ME/CFS. And if you’re one of those people, and think I’m wrong, I offer you a challenge – cure me – if you can.
