There's another whiff of (mild) excitement on the M.E. front for a Belgian doctor has developed a urine test for M.E./CFS. It's cheap (£15) and available from today.
Of course there's also much scepticism for we PWME'rs have heard all sorts before but, heh, the theory makes some sense and for £15 and a quick whizz I'll take a chance.
I've heard so much piss in the wind about this condition over 35 years that this can't be any worse and it's not painful.
If you want to know more there's a good article in today's Telegraph.
If you want to order the test go here
17 comments:
I await your results with bated breath. But I am wondering: what if the test comes back negative - does that "prove" one doesn't have M.E.?
Ah well, there's the rub you see. I don't know either.....suppose I don't have M.E. at all (according to this test) ...what is the matter with me ? Maybe I'm barking after all ;0)
hey cusp, i blogged this test too after someone else had alerted me to the article - but i hadn't realised it is available though! bet wessely is hoping we all fail it then he can section all 250,000 of us.
Interesting.
And at least it isnt painful. So many tests are!
I see you are testing the test, rather than the other way round.
Hmm very interesting.... certainly no harm in giving it a try.
What do we do if ours turn rainbow colored, or all glittery? ;-)
Well y'all I think it's worth a try but as Willow and Signs point out there's no knowing what the result really means. If mine (or any of ours) is rainbow coloured or glittery I guess we can just lay claim to a very creative streak and a very artistic bladder ;0)
can't wait to see what the result is, and if it tallies with how severe you feel you are. I suppose a positive result will give something to work on treatment-wise and also a way to see if things are improving... it does seem plausible... i am tempted to try it too, to test the test out more than anything!
I emailed off for info re. ordering the test and this morning had a reply saying they've been inundated (surprise !!!) and will be in touch again in a few days with an order form.
It'll be interesting to see how it all pans out. I think the advice is that if he test is positive you should go to your GP and presumably ask for the antibiotics and probiotics which Dr Meirler prescribes. However, what if your own GP in the UK (Dr M is Belgian) doesn't recognise the validity of the test and will not prescribe ? Maybe I should visit the Belian rels and go and see Dr M. myself if it's positive.
Thanks for the link, Cusp.
On reading this article I thought, Oh no, here again. Another pseudo-scientific theory about gut dysbiosis, 'toxins' and ultimately just another variation on the alt-health narrative.
Still, if you consider that 15 quid is worth a punt I suppose it might be interesting to see what you get back.
Heh Digi, well I share some of your cynicism but it is well researched stuff and Dr M's findings do tie in with other research that's about -- like Dr Cheney's and Teitelbaum's. Even Dr Myhill puts a lot of emphasis on 'gut-stuff' so for £15 it might be worth a go. My only concern is what I do wit hte result if it's positive. Knowing my very conservative GP he'll tell me to forget it
Howdy, stranger! I know I haven't been around in quite awhile, but I have been thinking of you. how goes the post-pull recovery with your jaw? I've been lucky enough to get some of the back ones crowned. I don't think I'd do well with removal. My bank account, however, had to bear the removal of great sums of money.
I wonder if this test pans out if you will chose anything different treatment-wise. Will it get you access to a different protocol? I'm very curious about the test. I wonder if someone with Fibromyalgia would test positive. Do let us know what happens with this. I think it will be an interesting mental journey as well.
I'll try to drop by more often!
Hiya Donimo. Good to see you up and about again and over here. Hmmmm....crowns... I 've got those to but from ages ago and my memory of having them done is that they took ages whereas the extraction took about 25 minutes. Mind you better to still have teeth (crowned or not)than have gaps like moi.
Not sure if the test is relevant to fibro although M.E./CFS ad Fibro seem related in some aspects. Still haven't managed to get hold of the test yet but I awaited with bated bladder ;0)
As for protocol well there is none in UK really. Unless you choose to follow the NICE recommendations of CBT and GET the the protocol (at least for me with my doctor) is to go away and get on with it as best you can. I wonder what his reaction would be if the test proves positive.
Have you seen the ME Assoication's response to this?
http://www.meassociation.org.uk/content/view/875/161/
I thought the interesting points were that it has been tested against healthy controls or other conditions. And that even if you get a positive GP's are not equipped to treat on the strength of it because there hasn't been any info about it in the medical scientific journals they read.
It's interesting but I do worry that it won't actually offer answers at this stage.
By the way - if you do go ahead the ME Association is interested in hearing from people who have and what happened if they then discussed it with their doc.
Thanks for this link Rachel. It's an interesting read and echoes my concerns.
I shall still go ahead and try the test --- because it's only £13 and it would be interesting to see what my GP says, but, as I said above, knowing my GP he WILL say exactly what the MEA supposes he will say i.e. that '..the UK medical profession has not yet received any information about either the underlying hypothesis, or the test, or the treatment recommendations, in their scientific journals...' and so he cannot interpret the results or prescribe any medication.
As usual in the U.K., we are left in the hole of half hearted research and cycnicism with the baying chorus of psychs in the background shouting about the whole thig being a waste of time because the our illness is psychological. Who can blame the M.E.community for their cynicism when there have been so many false trails and so many charlatans ? Even in this situation, it's all very well having a test and it (maybe) testing positive but what do you do with the results when the research on treatment isn't fully concluded or recognised ? It'll be down to people paying privately in the end. I cannot see the NHS or US medical plans forking out.I suspect that Dr De Meirleir will eventually set up some kind of treatment plan and be charging patients to buy his protocol from Belgium.
On the other hand it will be interesting to have the test and bring it to my GP's attention. He needs to be kept aware and shaken up every now and then. In nearly ten years I have never received anything from him that didn't come after some research or some proposal from myself --- apart from some anti-depressants which I stopped taking. Some of my proposals have helped and some not but at least I'm doing something other than spouting NICE proposals or sitting/lying on my backside waiting for it all to go away (which is generally what he proposes I should do).If I'm not pro-active in looking for some sort of treatment which might improve my situation, he certainly will not be. I'm on my own and know of no other doctors locally who are helpful re. M.E. The only doctors who have ever shown any real understanding are Dr Myhill and a Consultant at my local ME Centre who retired 2 months after I saw her and then the Cente was starved of money and has been in abeyance ever since (2005) waiting for money, staff etc. etc .
I'm pushing ahead because to me there does seem to be some validity in the theories of Dr De. There do seem to be common threads behind his way of thinking and Drs Cheney, Teitelbaum and Dr Myhill. However, I'm also sure Dr Shepherd (who is generally quite measured in his comments) is correct when he says that a lot of the research has been done with a specific subset of patients who are severly affected. I think you also have to bear in mind that (in my view anyway) the diag. of M.E. is given to people with a wide range of conditions which have symptoms in common but are not necessarily the same condition so that muddies the waters even more
It's interesting to note that a lot of people on the M.E. newsgroups and message boards are intending to buy two tests --- one for themselves and one for someone else who has not bdiagnosed with M.E. --- just to see if one of them tests positive and one negative. I'm not going to waste £26 but I am prepared to risk 13.
So, in conclusion [;0)]I shall shell out a few quid but at the same time I am cynical and prepared for my own GP's cynicism and his refusal to acknowledge the validity of the test or make any prescription based on it. On the other hand, if I don't have the test then I'm not moving at all and God knows I'm desperate to just do something.
I shall keep you all updated.
Hi there
How did it pan out?
Hiya Seahorse. I have't done the test yet because you need to print off a form and send it with the money to Belgium --- and our printer's on the hblink and the computer from which it runs is kaputt too --- so can't print the form !
I'll let y'all knwo when I've rectified the present situation
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