Invisible ME

What is Invisible ME?

Invisible ME is an Unincorporated Association which seeks to:

1. Widen awareness of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a serious illness affecting the lives of an estimated 250,000 people in the UK, with a focus on people in East Cornwall and surrounding area.
2. Encourage greater awareness of the reality of ME/CFS amongst health professionals.
3. Reach out to people experiencing the lack of support, misunderstanding and isolation of ME/CFS in East Cornwall and surrounding area and develop support networks.
4. Use the creative arts as a resource for communicating the experience of people with ME/CFS and to help sufferers give form, expression and meaning to that experience.

Invisible ME is based at The Old School Community Centre, Stoke Climsland.

What is ME/CFS?

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), is a debilitating disease classified as a neurological illness by the World Health Authority. Its causes are not understood and the lack of a specific diagnostic test makes diagnosis difficult.  Sufferers show a range of symptoms and its impact on their lives is profound.  At the very severe end of the ME scale, sufferers are house or even bed bound. The suffering at this level of disabilty has been likened to that of the latter stage of HIV/AIDS.   At a more moderate level, sufferers may have their previous activity levels reduced by 50% or more.

There is no known cure so treatment has to focus on the relief of symptoms.  There is controversy regarding some “treatments” currently recommended by NICE, the National Institute for Clinical Excellence.  Although ME/CFS is recognized by the NHS as a neurological illness, recommended treatments are underpinned by the erroneous assumption that the illness is psychological and that patients can get better by willing, pushing themselves beyond current limits to get better.  However, the key symptom of ME/CFS is not simply fatigue, it is what is called Post Exertional Malaise (PEM), in which, if a patient pushes themselves beyond their current limits, they ‘crash’, relapse and can become very ill.

The need for Invisible ME

The current NICE recommendations have caused huge distress to sufferers and a lack of understanding within the medical profession, which in turn has led to delays in diagnosis, misdiagnosis and denial of benefits and insurance payments.  There is currently no specialist medical care locally and no support groups for people with ME/CFS.

In response to the expressions of distress from patient organisations and on social media both here and in the US, NICE is reviewing the current guidelines for treatment to fit in with current, international biomedical research and patient experience.  The slow but growing awareness of ME/CFS has already led to a debate at Westminster. This was attended by North Cornwall MP Scott Mann and Plymouth Devonport MP Luke Pollard, who both spoke at the debate after receiving correspondence from several constituents.   We need to capitalise on this new growth of interest.

In line with this major development, we are therefore setting up the Association, Invisible ME, to promote wider understanding and awareness of ME in this region of the UK and to explore ways in which sufferers and their carers, frequently isolated and disbelieved, can be supported.

Through Invisible ME we are looking to make contact with ME sufferers and their carers in this area.  We plan to develop mutual support, share stories and experiences and promote wider awareness and understanding of this debilitating condition.

Who are we?

Invisible ME is an Unincorporated Association.  We have a Management Committee of three full members who are responsible legally and financially for the affairs of the Association. These full members are:

Cathryn Goodchild RGN  (Chair).  Cathryn is a Registered Nurse with many years’ experience working in palliative care.

Dr Hilary Doe MB ChB (Secretary).  Hilary worked as a doctor specialising in palliative care for 15 years.  In 2004 Hilary developed ME/CFS after which she had to give up her medical practice and from which she has never recovered.

David Oddie MBE, FRSA (Treasurer).  David has dedicated his career to working at the interface of the arts and education.  He is currently Director of the Indra Congress, which is committed to develop the arts in settings and situations of conflict.

The Association has a team of about 15 Associate members who provide support, advice and expertise in their various fields. These are all local people and include doctors, psychologists, a social worker, academics, complementary and pet therapists, arts and theatre practitioners and people with direct experience of ME/CFS both as sufferers and carers.