I finished The Vagabonds' Breakfast by Richard Gwyn a couple of weeks ago. The author is undeniably amiable and erudite, someone you'd want to have coffee with, but I found at times there was a lack of narrative drive, he seems to endlessly hang out with a ragtag of bohemian drunks in exotic, interchangeable locations, and you almost get the feeling he is putting this all down not for us but for himself. Still, all in all, a pleasurable read and his tone is always calm and poised even though he's often describing chaos and darkness. You almost forget he is ill he has so many (other) interesting things to say. Towards the end he discusses our need for narrative both as writers and human beings, the endless retelling of stories we go through:
...This eternal recounting, this need to tell and tell, is there not something appalling about it - and not only in the sense of whether or not we consciously or intentionally mix reality and fiction? Are there not times when we wish the whole cycle of telling and recounting and explaining and narrating would simply stop - if only for a week, or a day; if only for an hour?...
I absolutely loved that part.
And I hope this is still available for listening. An Irish writer with ME, Mark O'Sullivan, discusses his craft and illness: 'The whole thing with ME is about pacing'. (I also like his comment about building a book very, very slowly with 400 words a day, though for me it was often less - or no words at all. And it's the editing that really kills, leaving you on the floor, weeping with exhaustion.)
And some fabulous new fiction (an intentional mix of reality and fiction) here from the RCGP (Dr Gerada, Wessely's wife is the Chair), attempting once again to reclassify ME as a functional disorder rather than neurological. Did you know that according to the authors of this paper my illness is 'known colloquially in the UK as ME', so when I was diagnosed in 1984 and the consultant neurologist said I was gravely ill with myalgic encephalomyelitis (ME) - which I'd never heard of - he was using a colloquialism! Really, these spin doctors should get a major literary prize for their fiction.
Some more gems from these new guidelines:
GPs are encouraged to 'connect with patients by listening carefully to their beliefs about their symptoms'. Oh, just fuck off, will you! (Did you get that, Mr Hawkes, do you see what a hooligan patient I am?)
'Take a detailed bio-psychosocial history'. (Easy-peasy: I was absolutely well until I got Coxsackie B4 virus and then I was absolutely ill. End of story. An abnormal immune response which has ZERO to do with psychosocial bla bla bla.)
And still, all too predictably, peddling CBT and (dangerous) GET as the most effective therapies - oh, they are tenacious, these storytellers extraordinaire!
I will let the legendary Dr Speedy have the last word.
...This eternal recounting, this need to tell and tell, is there not something appalling about it - and not only in the sense of whether or not we consciously or intentionally mix reality and fiction? Are there not times when we wish the whole cycle of telling and recounting and explaining and narrating would simply stop - if only for a week, or a day; if only for an hour?...
I absolutely loved that part.
And I hope this is still available for listening. An Irish writer with ME, Mark O'Sullivan, discusses his craft and illness: 'The whole thing with ME is about pacing'. (I also like his comment about building a book very, very slowly with 400 words a day, though for me it was often less - or no words at all. And it's the editing that really kills, leaving you on the floor, weeping with exhaustion.)
And some fabulous new fiction (an intentional mix of reality and fiction) here from the RCGP (Dr Gerada, Wessely's wife is the Chair), attempting once again to reclassify ME as a functional disorder rather than neurological. Did you know that according to the authors of this paper my illness is 'known colloquially in the UK as ME', so when I was diagnosed in 1984 and the consultant neurologist said I was gravely ill with myalgic encephalomyelitis (ME) - which I'd never heard of - he was using a colloquialism! Really, these spin doctors should get a major literary prize for their fiction.
Some more gems from these new guidelines:
GPs are encouraged to 'connect with patients by listening carefully to their beliefs about their symptoms'. Oh, just fuck off, will you! (Did you get that, Mr Hawkes, do you see what a hooligan patient I am?)
'Take a detailed bio-psychosocial history'. (Easy-peasy: I was absolutely well until I got Coxsackie B4 virus and then I was absolutely ill. End of story. An abnormal immune response which has ZERO to do with psychosocial bla bla bla.)
And still, all too predictably, peddling CBT and (dangerous) GET as the most effective therapies - oh, they are tenacious, these storytellers extraordinaire!
I will let the legendary Dr Speedy have the last word.
5 comments:
I've been thinking that ME research is like one of those jigsaws with thousands of pieces and the sky is the hardest, takes patience and total dedication and motivation to solve, but slowly, slowly the picture emerges... but then you'll get a Wesselyite popping up, kicking the jigsaw off the table, saying, this is rubbish, I've got a better, more simplistic solution, and s/he'll produce a ten-piece chunky jigsaw like you get for toddlers, and snap it into place, snap, snap, snap: CBT and GET and Bob's your uncle!
Hi NMJ,
Great post again. I won't say anything more detailed about the GPs in nappies wonderful guidelines, I did enough of that elsewhere including MEA Facebook and Foggies.
I did post a link to the relevant GP Statement of Curriculum, which does make interesting reading, if only when you realise how different it is in relation to what was claimed in the medical students' guide. And also the Statement for Neurological conditions...Ahh if only (maybe one day eh?).
It is quite appalling that the 'training-bra' guide did not even refer to the Map of Medicine or include in full the (though inadequate) means of 'diagnosis' or even attempt to coordinate with what AFME actually conclude about diagnosis, effect and possible causation.
Maybe, just maybe, AFME in their response to this will make some headway...? They were featured in the 'guidelines' and I do feel they rightly need to step-up, though I can't help but wonder if this is also reflective of their (how shall I put this), 'misguided' feature on the 'Loraine' show recently.
Lady Mar has told me she is concerned and would be willing to step in with perhaps the APPG should AFMEs efforts prove inadequate, and I know Dr Shepherd is on holiday, so perhaps we haven't yet seen a proper and concerted response?
I hope this isn't left without challenge. Hate to think of the consequences - the potential damage that might be caused by all those 'brainwashed' GP wannabees out there... [shiver].
You think the fight will ever end for patients? You know when people are at their most vulnerable. It is quite the disgrace when we have to fight so damned hard for dignity isn't it?
Russell John Fleming (Firestormm)
What makes me really angry about the NHS and what is happening in the UK, is that there is solid evidence of good medical practice to treat ME "down under" in Australia (and elsewhere). I suspect that what I have is not exactly the same as what you have, but I was originally diagnosed with ME, so some others with the same diagnosis may have the same problems that I do - and it appears that food intolerance issues may be at least partly to blame. (I do realize that this is far from being the same situation for many in the UK, and neither is diet alone the only cure - I am still sick, albeit much better than before.)
My health has improved around 40% since I began a "detox" diet. I'm going to paste in below a summary of test results and medical treatment I'm receiving here (from a GP specializing in ME) - just to show what doctors in the UK could be doing, if the NHS would allow appropriate testing to be done:
Summary of my diagnosis & treatment plan
For those who are interested, this is the information I can provide following my recent third visit at the "CFS Discovery" Clinic in Donvale, Melbourne.
The following is for general information only and is not medical advice. I do not recommend self-diagnosis/treatment. I am under the care of a licensed medical practitioner (a GP) who has prescribed my treatment.
At the time of my first meeting with the doctor in mid-March, I met the Canadian Clinical Criteria for ME, but did not suffer from POTS, tender lymph nodes, or sore throat. Various tests were carried out and the results were as follows:
- slightly low DHEA
- low Vitamin D
- orthostatic intolerance
- fructose malabsorption
- dysbiosis
- insulin/glucose dysregulation
- moderately positive on the neurotoxic marker test
- sodium channelopathy
- some trigger points
- overgrowth of E-coli, prevotella, and bifidobacterium
- undergrowth of lactobacillus
- abnormal auto-immune antibodies (further tests in progress)
My second visit with the doctor (third at the clinic) was at the end of June. He was pleased with the progress I’d made due to following the “gut healing/detox” diet and suggested that I continue with it, but to add some dairy foods (I am negative for lactose malabsorption). He prescribed the following:
- lamictal 25 mgm ½ twice daily, to block the excess movement of sodium into the cells due to disturbed channel function
- a detailed 3 month rotation plan using antibiotics (amoxicillin EC and gabbroral/paramomycin) and probiotics (UB45 and SB FlorActive)
- L-glutamine EC
- Vitamin B12 sublingual (a specific protocol to be followed)
- Vitamin E
- Vitamin D3
- liposomal glutathione
- curcumin
- digestive enzymes as needed
I am also taking:
- Vitamin C
- multi-vitamins (Life Extension Veggie Tabs)
- Vitamin B complex with ALA and CoQ10 (Now Foods)
- magnesium citrate (Now Foods)
(If it's a problem to post any of this, let me know - my only wish is to share useful information that may help others)
Hey Firestormm, Am afraid my eyes glaze over when AfME are mentioned, they do not represent my illness, as far as I'm concerned, and interesting (and all too predictable) that RCGP mention them instead of MEA!
Hey Nicky, This is great you are doing so much better! So are you saying you think you were perhaps misdiagnosed and that your symptoms have been down to food intolerances/gut probs? I think many PWME do try to follow exclusion diets and taking of supplements but, in my own experience, this has not really helped (except intravenous vit C).
Hi nmj,
Sorry I couldn't respond earlier.
I've been diagnosed with ME twice, the second time using the Canadian Criteria, which I clearly meet, and I used to have severe PEM, brain fog, and a host of other symptoms. The theory of my doctor here (the clinic here collaborates closely with Dr Kenny de Meirlier in Belgium) is that the food intolerance is an underlying condition and the ME is then triggered by another event. My doctor thinks that my illness in late 2005 was that trigger (see: http://nickyreiss.blogspot.com/2006_01_01_archive.html). I woke up on 26 December 2005 feeling like I'd been run over by a truck, with all the symptoms of typical sudden-onset ME.
I too had tried various exclusion diets before now, with no effect. It's only since I began excluding almost everything (with new knowledge about fructose intolerance and the low FODMAP diet) that I began noticing a difference. Likewise with supplements - as Jodi Bassett has written, what seems to be important is to take the right supplements and to take them in conjunction with each other. One can't just begin taking - for example - CoQ10 and expect it to make a difference. I think everything needs to be done in combination - the right diet (according to one's individual food intolerances) and the necessary supplements and medications. Obviously it really helps to have a doctor who knows what s/he is doing. I got nowhere trying to treat this thing by myself. It's also possible that this is working for me because I have been ill for a relatively short period of time, therefore less damage has been done overall. I should stress, again, that I'm still undergoing treatment and do not (yet) consider myself cured - I still get brain fog and feel unwell under certain conditions, and still have a few other symptoms. But, overall, I'm doing much better and feel that I have at least some of my life back.
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