DO NOT ADOPT THE IOM CRITERIA !!
We do not understand why anyone in the UK would proactively recommend the IOM Criteria, which ignores not only the true nature of the disease, ME, but also Severe ME, which the IOM did not study.
The IOM report acknowledges, in chapter 4, under the section “External Validity” that the research base likely excludes the bedridden or homebound.
In no other disease definition are the most severely affected excluded!!
The IOM does not take into account the full symptom experience in ME. How can anyone, then, possibly recommend its adoption?
With NICE looming THE ONLY CRITERIA THAT WILL SUFFICE ARE THOSE LIKE THE ICC CRITERIA, WHICH TAKE INTO ACCOUNT the Neurological, Autonomic, Neuroendocrine and Immune system malfunctions that constitute M.E. , a disease at least as disabling or more disabling than other chronic diseases such as lupus, multiple sclerosis or rheumatoid arthritis, more extreme than end-stage renal disease and heart disease with a sickness impact equivalent to that of terminally ill cancer and stroke patients.
Anything else is a gift to the MUS lobby, who will misinterpret the symptoms as unexplained and psychiatric, requiring psychosocial not medical responses. This is a very real and present danger to the ME community, especially to people with Severe/Very Severe ME, who are particularly vulnerable to misinterpretation.
MEAction US is rolling out a medical credit programme for medical professionals based on CDC ME/CFS and hoping to export it to the UK and Australia
MEAction UK used CDC’s description of ME/CFS in their submission to the NICE draft scope (they say ICC-ME and “do” CDC-ME/CFS)
Parliamentary Forward ME group, in response to a specific question in the NICE draft scope about which criteria should be used to define ME, suggested, “CDC, IOM [not realising they’re both the same] or ICC.”
As predicted, what’s happening in the US is making its way into the NICE deliberations.
We desperately need the adoption of the best to date criteria for ME - ICC. Please sign the petition. Please tell your MP.
In the UK
Template letter for those wishing to contact their MP about the selection of the NICE review panel and folks on it who are connected to the BioPsychoSocial approach to treatment...
Who is in touch with their MP? If you want to contact your MP to request that they start representing you, see the template, below.
You can email to your mp and/or you can print off and post. Please let us know if you send this to your MP and let us know what you hear back.
If you need any help personalising it, please ask me and I will help where I can.
Dear ….. (Insert MP’s NAME),
I am writing to you as one of your constituents, who is affected by Myalgic Encephalomyelitis (ME).
(Add brief personal information here - you could include);
1. Year you became ill and or Year diagnosed, your age at time.
2. Impact on your health, before and after your illness – list symptoms.
3. Impact on your life – loss of job, earnings, ability to contribute to society, family breakdown, Carers required, loss of friends, etc.
4. Lack of treatment – Pace trial/Graded Exercise Therapy/CBT, antidepressants
On Tuesday 30th October 2018, cross party bank benchers attended the Back Bench Select Committee to request that Parliament hold a debate on ME. Carol Monaghan MP, Nicky Morgan MP, Kelvin Hopkins MP & Steve Pound MP, presented to the Chair, Ian Mearns MP and 30+ MPs supported the application and they are waiting to hear if they were successful, if they were I would be happy to advise you of the decided date for the debate.
As the APPG for ME was disbanded a number of years ago, there is currently no official support for people with ME (pwme) within parliament.
NICE are reviewing the current ME Guidelines, unfortunately it would appear that the Committee members who sit on the panel may have conflicts of interest as many are in some way linked to the flawed PACE trial.
I will be happy to speak with you, directly, please find my contact details at the bottom of this email/letter. Please do understand that as a ME sufferer I am chronically ill and this can affect both my cognitive ability and energy levels.
I would like to request that you support me, as your constituent and will gladly keep you informed of relevant updates. Please confirm if this is agreeable.
(Insert name and address (contact tel number) here).