The 25% ME Group is the only UK charity representing those who are severely affected with Myalgic Encephalomyelitis, a World Health Organization ( ICD10.9.3) classified disease, recognised by the UK Government as neurological. We subscribe to the use of the International Consensus Criteria (ICC) to clearly identify and separate ME from CFS, in order to ensure that ME is respected, treated and researched as a serious neurological disease impacting upon multiple systems of the body.
Therefore we cannot support nor validate the recently created CFS/ME Research Collaborative charter (CMRC) since, in our opinion it is an unacceptable waste of precious research funds, accommodating a range of research across a wide and vague criteria range not specific to ME. The CMRC, in our opinion, is more likely to prolong the current state of confusion rather than bring about much needed medical research or clarity.
Under the umbrella term “CFS/ME”, so often used to mean Chronic Fatigue (CF), leading to the mistreatment of people with ME; the CMRC does not and cannot represent or safeguard the needs of people with Severe ME.
It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for Myalgic Encephalomyelitis and for people with Myalgic Encephalomyelitis to be used for CF research.
Without the separation of ME from CFS and particularly Chronic Fatigue, the 25% ME Group fears there will continue to be misdiagnosis, misrepresentation and negation of Myalgic Encephalomyelitis alongside the inappropriate perpetuation of psychological therapies charading as treatment, that, as our research has shown, does great harm to our members.
The 25% ME Group supports the need for medical research, using specific criteria to safely identify Myalgic Encephalomyelitis, so that ME can be studied and identified accurately in research; this will not come about through, non ICC-based research into vague “CFS/ME”.
For these reasons, the 25% ME Group, along with other concerned ME charities (ie, Tymes Trust, IiME and Grace Charity for ME) wholeheartedly cannot support the CFS/ME Research Collaborative charter.
The 25% ME Group