Switched-on Ian Swales (the Liberal Democrat MP for Redcar and a member of the All Party Parliamentary Group on ME) asked what many people with ME/CFS would regard as The Big Question during Health Questions in the House of Commons yesterday.
Called last, Mr Swales asked:
“Following the closure of a specialist ME clinic in Bolton, will the Minister review the narrow NICE guidelines on the treatment of ME, so that patients can get the outcomes that work for them, and so that the doctors providing such treatment are not placed at risk of losing their licence?”
Andrew Lansley, the Health Secretary, replied:
“My recollection is that NICE itself is undertaking a review of the guidelines relating to the commissioning and provision of services for ME. I will check to ensure that that is the case, and if I am wrong I will of course correct the record. I will write to the hon. Gentleman in any case. It is not for Ministers to write NICE guidelines; that is a matter for NICE to deal with independently.”
Several other MPs then rose to speak but they were cut short by the Speaker, John Bercow, who said: “Order. I am sorry to disappoint colleagues but, as usual, Health questions have been heavily oversubscribed. The House is in high spirits, and it is only Tuesday afternoon.
If Mr Lansley would care to take our word for it, NICE has said it will not undertake a review of its 2007 Guideline on ME/CFS until 2013. And, yes, the MEA will be looking for it to widen the scope of the Guideline “so that patients can get the outcomes that work for them, and so that the doctors providing such treatment are not placed at risk of losing their licence?”
Rock on!
Well done once again Ian Swales!
NICE will of course say that there is no new evidence which would cause them to revise their hopelessly inadequate guidelines (CG53) for the treatment of M.E.
Nor will they acknowledge that the makeup of the guideline development group that railroaded CG53 into existence, was excessively populated by psychologists & their ilk and that the subsequent consultation exercise was a sham. The judicial review that followed was an appalling abuse, by “the establishment” of that process and was a stitch-up from the start.
Please MEA, write to Andrew Lansley and tell him about the biomedical treatments that have been shown to be beneficial to M.E. patients (together with references to the research findings which support the efficacy of those treatments), which NICE continue to deliberately ignore. – I’m thinking about GcMAF, Artesunate, Valcyte, Rituximab,etc. etc. Maybe none of these individually yet meets the standards required for NICE to recommend them as a treatment, but collectively, they challenge the fundamentally flawed thinking that spawned CG53.
Furthermore, as you know, there now exist a large number of biomedical tests which could be done on patients which could help them to substantiate the biomedical nature of their illness. These are currently denied to us (because, we are told, that they are only available in research labs), with the result that many people are stigmatised and struggle to convince anyone (including their own families) of the true nature of their illness. Thus, by failing to ensure that adequate testing is done, NICE is (IMO)complicit in the long running and on-going persecution & denigration of sick and vulnerable people with M.E.
Do the NICE guidelines apply to Wales, because there is still no provision for PWME in most of the country, including Cardiff, the capital and home of the University Hospital of Wales?
When it comes to Wales there is just a wall of silence I’m afaid.
There is no provision And no answers to why not from the assembly health minister.
Following on from what Dionysus says about the make-up of the NICE guideline development group (stuffed with psychiatrists etc.), similarly the PACE trial…done by psychiatrists and part-funded by the DWP. Presumably now considered the “gold-standard” of studies regarding treatments for ME, which as we know has appalling implications for us. And now, most terrifying of all, the prospect of its being used to “justify” denial of benefits from people ill with ME – it is incredibly hard to get into the Support group for ESA, and those put into the WRAG group can now be forced to do Mandatory Work Activity, just like (fit) people on JSA. (Link to Guardian report in news for 16 February 2012: https://meassociation.org.uk/?p=10)
Woomera – regarding the Welsh wall of silence – couldn’t possibly be to do with the presence of the UNUM Centre for Psychosocial and Disability Research at Cardiff University….nah…thought not (not)
Sasha – would that be the same Unum that can now afford expensive television advertising? You know, the one that was banned in several of the United States for cheating claimants?