Newry & Mourne ME/FMS Support Group are campaigning for Northern Ireland to independently adopt the CCC for ME. Please consider supporting their campaign:
Background:
There are no specialist ME services in N.Ireland. Members and supporters of the N&M group held a silent demonstration at Stormont after the recent conference on
Exercise Intolerance in ME. A large banner was displayed with pictures of bed bound ME patients, and an additional folder of images and statements of support was produced.
Photo by Jeannette Marley
Joan McParland, founder of the N&M group, explained how there is currently no specialist medical care for the estimated 7000 ME patients in N.Ireland.
She called on the Health Minister, Edwin Poots, to address this situation. She also asked that the Canadian Consensus Criteria for ME be adopted by health professionals in Northern Ireland.
A document explaining the initiative has been produced, and is copied at the end of this post.
Please show your support by signing the petition here:
Adopt CCC for ME in N.Ireland.
The group intend to show that there is widespread backing for this move.
The issue is much greater than simply the situation in N.Ireland. As explained, in the document, the issue of how ME is described is a major dilemma across many countries.
Yet it seems much is now changing, and many small initiatives, such as this one, can surely add up to make significant changes for ME patients world over.
Please support this campaign:
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A Case for Fully
Adopting CCC for ME/CFS in Northern Ireland
Terminology:
Myalgic
Encephalomyelitis (ME) is a chronic disabling neurological disease first
described by the World Health Organisation in 1969.
Chronic Fatigue
Syndrome (CFS) is
a name now widely used for ME. Most ME patients however feel that this name trivialises
the severity of their condition.
Canadian
Consensus Criteria (CCC) is the abbreviated name given to a set of
diagnostic criteria produced by an international panel of experts in 20031.
ME/CFS is an
abbreviation used in the CCC to denote the disease ME. This document uses the
abbreviation ME except when directly referring to the CCC.
Fibromyalgia
(FMS) is
a painful disabling condition often thought to be part of the same illness
spectrum as ME. ME patients who exhibit pain are often given an FMS
diagnosis.
Background:
There
have been various attempts to produce diagnostic criteria for defining ME. Some
descriptors have included patients with depression or other undiagnosed fatigues.
This situation can adversely affect research outcomes meaning that treatment
recommendations can be misleading.
In
the USA, the Department of Health and Human Services (HSS) has recently
commissioned the Institute of Medicine (IOM) to produce diagnostic criteria for
ME and CFS. There has been huge international opposition to this move, by both
the ME experts and ME patients who favour adopting the CCC with immediate
effect.
Indeed,
50 international ME experts have now signed a joint letter to the HHS asking
that the IOM contract be abandoned and the CCC accepted2. This was
backed up by a patient advocate letter signed by 171 individuals3
and an online petition with over five thousand signatories4.
The
fifty ME experts agree that the CCC should be immediately adopted both for
medical diagnosis and for clinical research. Further they say that the CCC
should be used as the basis for future revisions in the light of ongoing
research.
Why
Northern Ireland should lead the way:
Northern
Ireland is in a unique situation, in that it can independently choose to adopt
the CCC for ME/CFS.
This
move would give local doctors the best means to accurately identify patients
with ME and this could potentially lead to better prospects for patient
recovery and hopefully an earlier return to a productive life.
Newry & Mourne ME/Fibromyalgia Support Group have already been
pro-active in bringing some of the foremost researchers in ME to Northern
Ireland to speak to medical professionals. The most recent being the
presentation by Dr Mark VanNess in Stormont for which two Continuous
Professional Development points were awarded by the Royal College of Physicians
in London. It is hoped that more presentations of this nature will follow.
Current
NICE guidelines recommend that ME patients should have Graded Exercise Therapy
(GET) to help them recover. GET is now known to be harmful for ME patients
(5,6). Adopting the CCC would allow Northern Ireland to take the lead in
developing a more sympathetic and paced approach to the treatment of ME.
The
fact that currently there are no specialist ME or FMS clinics in Northern
Ireland, leaves open the possibility of creating a brand new ME and FMS Clinic
that could become a centre of excellence, perhaps even leading the way for ME
and FMS treatments globally! The new clinic could adopt a fresh perspective and
up-to-date outlook, with diagnostics and treatment options based on the very
latest biomedical research.
Perhaps,
the new Centre of Excellence for Public Health at Queen's University Belfast,
could collaborate with international researchers to bring the biomedical study of
ME and FMS to Northern Ireland?
An estimated
seven thousand ME and/or FMS patients in N.Ireland are currently unable to
access specialist medical care. Many of
those have lost their livelihood and active lives. Most would eagerly return to work if their
condition could be better managed or improved.
Northern Ireland
has a chance to lead the way: by fully adopting the CCC; by promoting the
understanding of ME and FMS as physical illnesses; and perhaps even by creating
an ME and FMS Centre of Clinical Excellence.
References:
Proposed by:
Newry and Mourne
ME and Fibromyalgia Support Group
With the support of:
Collection of
signatures in progress.
Giving:
Name,
Status (eg patient, carer, physician, ME or FMS
specialist, other position.)
Professional qualifications (if applicable)
Brief background (illness severity & duration,
age & work status, or interest
in ME or FMS)
Country of Residence (For UK residents please
specify if N.Ireland.)
