Adopt CCC - Initiative by Newry & Mourne ME/FMS Support Group

Newry & Mourne ME/FMS Support Group are campaigning for Northern Ireland to independently adopt the CCC for ME.  Please consider supporting their campaign:

Adopt CCC for ME in N.Ireland  Online Petition.
(Post edited to insert the petition link, which was set up after this post was first written).

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:

1.  CCC. The full name of the paper is “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome. Volume 11. Number 1 2003. It is summarised in an overview document found here: http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf   

2. ME letter signed by 50 ME experts can be viewed here: https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf    

3. ME letter signed by 171 patient advocates can be viewed here: https://www.dropbox.com/s/3rewnlskfkfhmjz/Updated%20Signatures.pdf  

4.  Petition signed by over 5000 signatories can be viewed here: https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/?wHCXadb  

5. Paper demonstrating adverse effects of exercise: Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome Christopher R. Snell, Staci R. Stevens, Todd E. Davenport and J. Mark Van Ness (2013) http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short

6. Article first published in American and Banking & Market News:  Incorrect Government Information Could Be Hurting Chronic Fatigue Syndrome Patients, New Research Finds (2013) http://www.prohealth.com/library/showarticle.cfm?libid=18503

Proposed by:

Newry and Mourne ME and Fibromyalgia Support Group

With the support of: 

Collection of signatures in progress. 

Please email to: newrymournemefms@live.co.uk

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.)

Web address (if applicable)

PS Or just send your name indicating your support......


Link to petition again: Adopt CCC for ME in N.Ireland