RiME: Letter from Countess of Mar

“… I am greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET.”  Countess of Mar 13 November 2008 (Patron to The 25% M.E. Group for the severely affected,
ME Research UK, BRAME, The Young ME Sufferers Trust)


RiME  Campaigning for Research into Myalgic Encephalomyelitis

Lady Mar, NICE Guidelines, GET and CBT

The following is an extract from a letter dated 13/11/08 from Lady Mar to Paul Davis:

“… I am greatly saddened that there is so much hostility to the NICE Guidelines and, specifically, to CBT/GET. I have personal experience of the effects of an illness which wasn’t diagnosed until I’d had it for three years – OP poisoning. I have been through the disbelief, both from medical profession and family. I have had a referral to a psychologist (which I refused). I know what it is like to suffer excruciating pain and mental confusion. I have learned to manage my illness (call it CBT, if you like), which has left several unpleasant symptoms, jointly with my GP and consultants, so I think I have some idea where people with ME are coming from. The whole point is that CBT/GET are not compulsory. At the moment there is no other universal treatment. Might I respectfully suggest that you read the NICE Quick Reference Guide carefully and, instead of vigorously opposing everything in them, you use it its contents to empower people with ME to negotiate the best way forward for them with their practitioners, specialists and social service providers?

The CMO, the Department of Health and NICE acknowledge that ME is not a psychosocial problem but, as with any long-term illness, there are psychological aspects to it. In the absence of any treatment, they recommend CBT/GET for a few who might benefit from it. It really is time that we all acknowledge the good bits of any government instigated proposals and that we work together to put right those parts that are unhelpful…”

The full content of the letter will be published shortly.

So will RiME’s response to the Terms of Reference for the Services Inquiry.

Paul Davis  rimexx@tiscali.co.uk

RiME  Campaigning for Research into Myalgic Encephalomyelitis


2 thoughts on “RiME: Letter from Countess of Mar

  1. We are repeatedly told that CBT and GET are the most promising options for treatment of ME/CFS. What are the others, and why are they not available for patients to try?

  2. Treatments such as antiviral drugs and immune system therapy have been proposed and there are drugs like nimodipine (a calcium channel blocker licensed for use in short term therapy for the improvement of neurological outcome following subarachnoid haemorrhage) which some private practitioners will prescribe at considerably reduced dosage for the improvement of neurological symptoms in ME – but nimodipine is not licensed for use in ME. Some NHS practitioners will prescribe gabapentin (brand name Neurontin) – a medication originally developed for the treatment of epilepsy but used to relieve nerve pain in ME, also melatonin for sleep disturbance. Some may support Vit B12 injections.

    But NHS GPs, hospital doctors and consultants are largely constrained in what they can legally prescribe by whether a drug has been licensed for use for a specific condition, that is, whether it has undergone safety and efficacy trials for use in the UK for that specific condition. NICE guidance is not mandatory, but NICE is also used as a guide to drug prescribing.

    As you are probably aware, the NICE Guideline G53 on “CFS/ME” makes few recommendations for drug treatments for symptoms and no recommendations for drugs to treat underlying cause. NICE G53 specifically recommends that certain drugs, including antiviral agents, should not be prescribed in “CFS/ME”. So practitioners and specialists working with the NHS are unlikely to be willing to prescribe unlicensed treatments or support the kind of experimental treatment protocols being followed by some US sufferers. So you would be looking at private practitioners.

    A drug already licensed for use in a specific condition, for example, the antidepressant duloxetine (Cymbalta®), is also licensed for use in neuropathic pain in diabetes but is now being trialled for use in FMS and CFS. Duloxetine is a controversial drug which has been linked with suicides and suicide ideation. In the US, trials for duloxetine for FMS sufferers have already been undertaken; in the UK, Guys Hospital has been trialling duloxetine in fibromyalgia syndrome sufferers. In the US, trials for the safety and efficacy of the use of duloxetine in CFS are currently being sponsored by Eli Lilly. But for use in the UK for CFS, this drug would most likely have to undergo specific safety and efficacy trials, even though potential side effects have already been established through trials for its use in other conditions. (I’m using this purely as an example, not advocating the trialling of duloxetine in ME or CFS, to demonstrate why it can take years before an existing drug treatment is licensed for use in other conditions.)

    See the DVDs of the Invest in ME conferences, ME Research UK website and the e-lists Co-Cure, Help ME Circle and Yahoo CFSFMExperimental message board for recent research and discussion of treatments.

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