CAMPAIGNERS have called on NHS Scotland to ban an exercise treatment which encourages patients with chronic fatigue to "push through" their symptoms, saying it has left some in a wheelchair.
Charity, ME Action Scotland, is pushing for the change ahead of what it fears will be a surge in cases of post-viral illness in the wake of the coronavirus pandemic.
More than 21,000 Scots already suffer from Myalgic Encephalomyelitis (ME), also known a chronic fatigue syndrome.
Onset typically follows a bout of viral or bacterial infections such as glandular fever or pneumonia, with evidence also suggesting that ME is more likely to arise if the patient felt fearful or anxious during their illness - something which is more likely in a pandemic scenario.
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Symptoms include debilitating muscle and joint pain, extreme exhaustion, nausea, dizziness and insomnia.
Most patients will have periods where their condition improves but then relapses, sometimes leaving them bedridden.
Professor Chris Ponting, chair of medical bioinformatics at Edinburgh University and group leader in the MRC Human Genetics Unit, said: "Unfortunately, it is possible that Covid-19 will lead to an increase in the number of people with ME.
"Of those people who have Covid-19 symptoms quite severely, I would expect about 10 per cent to have fatigue-like syndromes after six months.
Currently, many patients with ME in Scotland are prescribed a treatment called Graded Exercise Therapy (GET) which asks patients to continually increase their levels of activity and push through symptoms.
A survey of 2,274 ME patients carried out by research Oxford Brookes University found that 67 per cent of those who underwent GET experienced a deterioration in their physical health.
ME Action Scotland said it has heard from patients who are now housebound or confined to a wheelchair having previously been mobile and able to work.
In 2017, the American Centres for Disease Control removed GET from its recommended therapies for ME following an outcry over a controversial clinical trial.
ME Action Scotland has written to Scotland's Chief Medical Officer and Health Secretary Jeane Freeman asking them to do the same.
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The PACE study, a randomised control trial with 641 participants from Scotland and England, concluded in 2011 that psychotherapy and exercise could significantly improve and sometimes cure ME.
Patients who claimed GET was actually making them worse were dismissed and accused of hijacking the debate with a "very damaging" agenda.
Unpublished data from the trial was eventually released in 2018 following a lengthy legal battle brought by an Australian patient, resulting in other scientists criticising PACE as fundamentally flawed with "grossly inflated" recovery rates.
A 2019 review of the PACE trial by the UK's Health Research Authority did not find fault with the investigators, however.
Janet Sylvester, of ME Action Scotland, said: We have been campaigning to have GET removed as treatment in Scotland since 2017.
"We are urgently renewing our appeal to have GET removed as treatment in Scotland in the light of the evidence that this harmful treatment not only continues to harm ME patients, but is likely to be recommended to post Covid-19 patients suffering from fatigue related illnesses.
Louise McAllan, from Stirling, was prescribed GET after an acute onset of ME aged 30.
She said: "It would be a six month wait for treatment and during this time I began to recover, but once the treatment began however, I rapidly declined. As my body failed I was told to keep pushing through, that it was just a mindset and that exercising would make me better.
"I trusted them and desperately wanted to be better, so I did what they said and tried to ignore the pain. After treatment I couldnt even lift a fork to my mouth to eat and I remained house bound and unable to walk for many years. I had to give up my job as a teacher and struggled to see friends or do any activity at all.
"Despite how unwell it had made me, I was offered GET several times more by different GPs, who didnt believe that it had made me worse. GET should not be offered to anyone else, it needs to stop immediately."
A spokeswoman for the Scottish Government said it is working with Action for ME to fund research into the biomedical understanding of the illness.
She said: Graded Exercise Therapy (GET) will not be suitable for everyone with ME/Chronic Fatigue Syndrome (CFS). While some studies report people feel worse after GET, these studies also reflect some people with moderate to mild symptoms of ME/CFS have found GET to be beneficial in treating their condition.
"The risks of treatment must always be explained and discussed before individuals decide to proceed with treatment delivered by a suitably trained GET therapist with experience in ME-CFS.
The findings from two projects we are currently undertaking, to understand the needs of people living with ME/CFS and what practices and provision are available, coupled with the forthcoming update of the National Institute for Health and Care Excellences guideline on ME/CFS that will take account of latest evidence, including patients experiences about GET, will inform developments in care and support for ME/CFS in Scotland.
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