Sunday, 24 March 2013

An elephant - aka fatigue clinic - in the room

A friend in Italy sent me this  seven minute link to Dr Kenny de Meirleir speaking about the importance of the Canadian criteria for ME and how the name CFS is nonsensical (subtitles in English). He refers to Ramsay-defined (ie. post-viral)  ME, 1.50 mins in (it is glorious for me to hear a doctor refer specifically to Ramsay) and speaks of  us 'having lost more than 20 years in the struggle' of biomedical v psychiatric model (6.50 mins in).

I wondered whether to go to the open meeting on Friday where the team who run the new Lothian 'ME/CFS' clinic were speaking.* I did not want to waste energy on being stressed  - and it was skin-peelingly cold! - but it was close by and I figured I might get a better idea of it all. Unfortunately, it was reinforced for me that while the team is clearly made up of well-intentioned physios and psychologists, they are  running  a fatigue clinic, not an ME clinic, and I honestly couldn't see that they have a true understanding of the complexity of Canadian-defined ME. The specialist physio was actually involved with the PACE trial and I asked if there were concerns about the wide criticism of PACE and the fact that PWME often get worse with graded exercise. The answer was, unsurprisingly,  No,  and it was suggested that getting worse with GET was down to a bad therapist rather than an intrinsic danger in the therapy. The younger physio did, to be fair,  very briefly refer to GET being controversial but this was not explored, so I had to ask,  it would have been ludicrous not to, the elephant would never have left the room.

This clinic is also a member of BACME, not an endorsement, I'm afraid. I am not sure if they were trained by BACME, I wish I had asked.  Invest in ME describes BACME here. And ME Association voiced its concerns here. (My own  take on  BACME launch in 2010.)

I always say you can only know your own illness, if x, y, or z makes you better, I can't deny it, and why would I, but I can ask, do you have the same illness as me? One of the team (I can't remember who, I am not honestly sure who was who, my head is jumbled) while referring to the different causes of ME said that some of their clients are people who have 'never had much energy in the first place and feel themselves to be getting worse': I wonder, would such patients -  idiopathically fatigued  - attend an MS or neurology clinic? Of course not. Tragically, the confusion of criteria (ME = chronic fatigue) and lack of unique biomarker mean we are probably going to have these mixed clinics for the forseeable future in the UK.

Still, the Lothian team were keen to show that they believe ME is neurological, and that neither of the therapies are mandatory, you can choose to have CBT or GET or both (one young woman said she was being helped enormously by GET).  I asked the senior physio, informally after the panel discussion, what the clinic could do for me and she said that I would be a challenge and they could perhaps do no more than I already do for myself. I thought this was an honest answer. I also asked why they could not provide therapeutic massage - it helps me considerably but is prohibitively expensive - and the reply was it had not been proven to be effective. But neither has CBT or GET. Not, at least, for the illness I know. (I also spoke during the break to someone with ME who said that her thinking 'had been messed up by CBT'.)

The clinic is here for two years (pilot project). Having already expressed my dismay at such fatigue clinics coming to Scotland, and having now listened to the team, I think it is probably shooting the messenger to be vexed specifically by an Edinburgh clinic  (though I am still hugely vexed by the process that led to the clinic happening, namely, the "bargaining away classic ME as a distinct organic neurological disease, in favour of the umbrella term ME-CFS..." ). It is, though, hugely important to keep stressing to the therapists the difference between chronic fatigue and neuroimmune illness, since the NHS is apparently failing to do so by setting up such combo ME/fatigue clinics in the first place (I'm beginning to see them as settlements, a kind of land grabbing). I also wish I'd asked the team about the wording on their GP/patient leaflets about 'entrenched views' and 'accepting a diagnosis of ME/CFS', but there is never enough time.

The clinic gets its referrals from GPs, who, whether they are heeding the Scottish Good Practice Statement or not (it is not perfect, but better than NICE),  will still be misdiagnosing and overdiagnosing ME.  But if we can feed back enough information and experience, maybe a clinic specifically for neuroME can emerge from this (I know this is hopelessly optimistic)? I hope  the Lothian therapists can attend  the Invest in ME conference in May. Perhaps they are going. If I lived in London I'd be there like  a shot.

* I've just noticed the wording in para 9 of the NHS Lothian pathway document: It is acknowledged that there is incomplete consensus among public, patients and professionals on diagnosis and treatment for this patient population. It is possible that the pathway will not be acceptable to all. 

 **  SGPS  describes post-exertional malaise (PEM) as 'commonplace', no, it isn't, it is cardinal feature of classic ME! If you don't have PEM, you don't have ME.

*** And this is a good guide to the confusion of terminology re. ME and CFS.

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