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Long-Term Illness with ME


The COVID-19 pandemic has brought new problems for society to tackle.

COVID-19 patients who fail to recover fully (the covid long-haulers as they are termed) are continually featuring in the news - a subset of those infected who are experiencing similar symptoms to people with ME.

These patients currently, for the most part, have not received the negative or disparaging comments as have systematically been applied against people with ME over decades.

Nobody doubts the seriousness or the cause of long-haul covid.
In this, covid patients currently have an advantage in that research may well be brought forward to bear on this issue.

Not so for long-term ME patients whose best hope may still rest on being grouped in with long-haul covid patients.


Everyone with ME should have adequate treatment and hope for an improvement in their condition.

Yet 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 healthcare systems that have been 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 "fortunate" 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, and cannot 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.
Quite different from the long-haul covid stroies that seem to be something of a surprise to the media.

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 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.

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

The worst symptoms seemed 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 Dr Bell 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.

Here is the video of David's presentation at #IIMEC6 -

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




The long-term ME patients constitute an area which has been 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 has been ignored, buried in the soundbites of the media who still remain oblivious to the reality of ME; callously removed from the policies of research councils and government health departments due to apathy or given lower priority than other issues; 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 benefit anyone in 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.
Maybe the abundance of covid research and the urgency given to long-haul patients will tun the page for long-term ME patients also.


This subject needs to be recognised and addressed in healthcare systems.

The long-term ME patient needs to be represented.

In the meantime we need to 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.
And hope that long-haul covid patients will not end up being treated similarly if/once an effective vaccine for COVID-19 is universally deployed.

Further Reading:

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

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