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Long covid has resurfaced tensions over treatment of chronic fatigue syndrome

Many long covid patients are experiencing extreme fatigue, a situation which has reignited the polarisation in approaches to treatment and rehabilitation of chronic fatigue syndrome (CFS), according to a special report today.

The BMJ reports on examples where doctors have been challenged for speaking out in the media after talking about the role of exercise in rehabilitation.

But it also finds that beyond the controversy, some clinicians see an opportunity for long covid to progress the understanding of post viral syndromes and to acknowledge they are a very real condition.

CFS, also known as ME (myalgic encephalomyelitis), is a complex long-term illness often triggered by an acute infection with a wide range of symptoms that can have a significant effect on daily activities, the most common being extreme fatigue.

In 2011, the PACE trial found that both cognitive behavioural therapy (CBT) and graded exercise therapy (GET) led to greater improvements in some participants than medical care alone. But the results led to controversy as some CFS/ME advocates object to suggestions that their illness has a psychological element.

And tensions have now resurfaced with the advent of the pandemic and long covid.

Around 376,000 people in the UK report symptoms more than a year after covid-19 including extreme fatigue and other symptoms similar to post-viral fatigue syndromes and ME/CFS.

Freelance journalist Melanie Newman spoke to clinicians and academics involved in ME/CFS and long covid research, and found that what advice is given, what research is conducted, and how it is communicated has become a highly sensitive issue.

Some have been challenged for speaking out. For example, Michael Sharpe, a professor of psychological medicine, was castigated for suggesting the disease is “all in the mind” or created by the media, while an activist asked for Trish Greenhalgh, professor of primary care at Oxford University, to be removed from a conference because she had previously commented on exercise and PACE in a public webinar.

Professor Paul Garner at the Liverpool School of Tropical Medicine, who had recovered from long covid, says some advocates actively oppose research on exercise. “They believe the disease lasts for life,” he says. “They reject any research that examines psychological approaches to treatment or that evaluates the role of progressive physical activity in recovery in ME/CFS, and I would assume by extension to long covid.”

Charles Shepherd, medical advisor at the ME Association told the BMJ: “We are not against exercise. Our view is that graded exercise can be harmful.”

Ben Marsh, an NHS consultant paediatrician who contracted viral pericarditis in 2017, thinks physical therapy should be treated like medication or surgery, with patients told about possible side effects and what to look out for.

Newman spoke to other doctors and healthcare professionals helping long covid patients and found them to be very aware of these concerns and quietly working out how best to treat each patient without causing them harm.

Results are – predictably, given the early stage of the research – mixed, she writes, but CFS/ME specialist Rachael Rogers at the Oxford long Covid clinic, says the key is careful screening, assessment and individualised treatments.

Respiratory consultant Paul Whitaker, who set up the first long covid clinic in Yorkshire, says: “For my longstanding patients with long covid who fulfil the criteria for CFS they do seem to get worse with strenuous aerobic exercise. However, long covid is a very diverse group and there are many others who do need an exercise based regimen.” Defining which groups will benefit from exercise remains a challenge, he adds.

In a linked commentary, Carolyn Chew-Graham, GP and professor of general practice research and colleagues argue that patients with long covid are still struggling to get their voices heard above doctors. They believe that this is a form of “structural iatrogenesis,” where patients are harmed by power imbalances in the bureaucratic and cultural systems within medicine.

People with long covid describe feeling “gaslighted” because the opinions of a few have tended to dominate the evolution of treatment, investigation, and a growing knowledge base, they write.

Notes for editors
Feature: Chronic fatigue syndrome and long covid: moving beyond the controversy
Patient Commentary: How power imbalances in the narratives, research, and publications around long covid can harm patients
Journal: The BMJ

Link to Academy of Medical Sciences press release labelling system: https://press.psprings. co.uk/AMSlabels.pdf

Externally peer reviewed? Yes (feature), No (patient commentary)
Evidence type: Feature; Opinion
Subjects: Chronic fatigue syndrome and long covid patients

CBD Oil for Chronic Fatigue Syndrome

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Chronic Fatigue Syndrome is a condition involving deep fatigue, unrefreshing sleep, and a worsening of symptoms after exertion. Its exact cause is unknown, but it is believed that a combination of genetic predisposition and environmental factors bring it about. With no simple test to identify it available, diagnosis is based on the symptoms and exclusion of other causes. Treatment is aimed at modifying your lifestyle and relieving symptoms with medications and therapies. The condition is also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or systemic exertion intolerance disease (SEID).

Every person with chronic fatigue syndrome has his or her own unique set of symptoms, the intensity of which can vary. The symptoms that are required for the diagnosis of ME/CFS are fatigue, post-exertional malaise, and sleep problems. In addition, either cognitive impairment (brain fog) or a worsening of symptoms while you are upright (orthostatic intolerance) must be noted.

The fatigue and drop in activity level must be present for at least six months. The characteristics of the fatigue must include that it is not relieved by sleep or rest, it isn’t the result of strenuous exertion, and it significantly lowers your ability to function normally in most situations. Your symptoms may worsen for 24 hours to days or even weeks after physical or mental exertion.

Other common symptoms include:

  • Sudden and distinct onset, especially following a flu-like illness
  • Pain, including muscle aches, joint aches, or headaches
  • Flu-like symptoms that may include a sore throat, swollen lymph glands, or low-grade fever
  • Sensitivities and intolerances to heat, cold, noise, light, or alcohol

There can be many additional symptoms including anxiety or a sensation of irregular heartbeat. Common overlapping conditions include depression, irritable bowel syndrome, tinnitus, premenstrual syndrome, and endometriosis.

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