Invest in ME Research
Christmas/New Year Appeal - Donation

We have had a very generous donation of £1000 from Caroline John from Scotland.

We would like to thank Caroline for this amazing gesture.

Caroline is a bespoke jewellery designer who has had ME for over three decades.

She has tried to run a short Open Studio in May each year. The OS is what she calls her sanity project to remind others and herself that she is more than her illness.
But it is an enormous struggle for Caroline to hold on to that part of herself that isn’t ME.
The reality is that the effort she puts into the two months before the workshop means that she spends the next 10 months bearing the consequences until the next event - always worrying that the next event will no longer be an option.

Caroline's story leads us on to a subject that is rarely recognised or discussed and should be a central part of future debates - the long-term ill with ME.

Long Term Illness with ME

Having ME for decades brings with it many different issues.

Apart from obvious direct effects of the illness on one's life, with the impact on family, on career, on financial situation - there are the more insidious and rarely mentioned issues - loneliness, isolation from society, further health issues with new symptoms and possible co-morbities developing, invisible to healthcare systems due to the label of ME.

Care and compassion are also casualties of health systems that are influenced by commercial or career interests and have no funding and no time for patients suffering from long term ME.

People who currently have had an ME diagnosis for several decades will know of all of these issues.

If a patient is "lucky" enough to receive attention then they are quite likely to be at the end of a long queue.

Healthcare systems that cannot understand the disease, let alone treat it, will have no capacity for managing the longer term consequences.



For those recently diagnosed with ME the thought of the situation getting worse, or being long-term, is something that does not initially come to mind.
Long term illness from ME is something that is not discussed much - although one can often hear of stories of those who have to endure this disease for decades.

The book Lost Voices from a Hidden illness eloquently brought out some issues regarding long term illness.

Those patients who have had ME for several decades were young at the beginning, had dreams and ambitions, aspired to do more.
Even with their disease these long term sufferers will have hoped for recovery, for research that brought forth treatments.
Many might also have become advocates and contributed what energy they had to changing things for the better, to raise hope that things would be different.

It is testimony to the courage and resilience of those long term ill that they continue to hope, to campaign, to trust for a better life.
It is a sad and continuing indictment on successive governments and health departments and, especially, on research councils and their appointed guardians of research into ME that they have failed these people.

We invited Dr David Bell (Lyndonville NY,USA) to speak about his longtitudinal study at our IIMEC6 conference in 2011.

From the IIMEC6 conference report -

Dr Bell presented his work on the 25 year follow-up of the young people from the initial illness which triggered his research.
He described this initial outbreak in 1985 in a small rural community just south of Toronto.
210 people remained ill following a flu-like illness.
Many more had the illness, but had recovered by 6 months.
Those remaining ill were finally diagnosed as suffering from ME/CFS.
60 were children and adolescents. The 13 year follow-up was written up in the Journal of Paediatrics.

80% described themselves as doing well.
Half of these still had symptoms but leading a reasonably normal life, the other half seemed OK. 20% had ongoing illness and were "disabled".

He then asked "How should recovery be defined?" - "Is it absence of symptoms or adaptation?"

If the answer is adaptation, this leads to confusion and a false perception of health.
Factors included here would be: patient looks OK, tests are normal, specialists come up with no diagnosis and there is a lack of evolution into an illness such as MS.

This confusion is damaging for adolescents.
The current study included a follow up of 28 people, and a wide range of assessment tools was used.
3 had developed malignancies (thyroid cancer, cervical cancer and leukaemia) and were excluded.
The remainder (25) were represented by 3 groups. 2/25 (8%) were well. 18/25 (72%) had remitting illness - they considered themselves alright, but scores indicated they were not well.
The third group - 5/25 (20%) had persistent ME/CFS. They considered themselves disabled with severe symptoms and reduced activity.

These people were on disability pensions, but ME/CFS was not used as the diagnosis to be eligible, and the illness was often called other names to ensure the benefit.

He pointed out how people do learn to adapt to this illness. Many seem to recover but then slide down again.

The worst symptoms seem to be associated with sleep and pain. He described his disability scale from 0-100 with 100 being entirely well.

Many of these patients scored around 30. He felt one of the most important questions for the clinician to ask was the number of hours of upright activity attainable each day.

In his current study, controls scored 15 hours, the persisting severe group 1-5 hours and the remitting group 13 hours.

In summary he concluded that at follow up 72% had mild to moderate illness, although considered themselves OK. There was health identity confusion, by remembering self being much worse, and now considering self "well".
Time will tell the long term outcome.

He felt strongly that he was looking at the natural history and course of the illness rather than any medication or vitamins promoting recovery.


Toni Bernhard also recently addressed some aspects of long term ME illness in this article click here

The long-term ME patients constitute an area which is almost totally neglected - something that should be of major concern to healthcare providers, along with the severely ill and children with ME.

The long term ill from ME are not only those in old age either. Younger people are included in this group if they were diagnosed with ME in their early teens.

Yet it is ignored, buried in the soundbites of the media who remain oblivious to the reality of ME; callously removed from the policies of research councils and government health departments due to apathy; unable to be researched properly due to the lack of funding from those agencies responsible for funding; and often let down by support organisations who take subscriptions but do little to convince anyone of this neglected section of society.

We can only hope that we can soon get to a situation where all people with ME will get adequate treatment based on results from well funded biomedical research.


This subject needs to be included in debates about ME in any parliament setting. It needs to be recognised and addressed in healthcare systems.

The long term ME patient needs to be represented.

In the meantime we recognise the courage of those who have had to endure ME through many years with little or no support and yet who continue to remain hopeful and try as best they can to help to change things.

Further Reading:

Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework





Back to our fund status page

Contact us

Send us an email. Use the form below