What Patients Can Learn From Chronic Fatigue Syndrome
There is still a long way to go in figuring out what long COVID is and how it affects people’s bodies, let alone predicting how long it could be until symptoms go away, if they ever do.
Alison Sbrana knows better than most people what that “if” means.
She has myalgic encephalomyelitis/chronic fatigue syndrome . It’s a disease with a lot of symptoms that overlap with long COVID.
Sbrana knows what it’s like to cope with getting sick and never recovering. It is part of the reason she is a board member of Body Politic, a health justice organization that runs a support group for people with long COVID.
Coronavirus Faq: What Is Long Covid And What Is My Risk Of Getting It
Sometimes, people join the group and ask, “How long do I have to live like this?” Sbrana doesn’t have that answer nobody does so, instead, she tells them: “This might be a new normal for you and you need to figure out how to build a fulfilling life with how your body and your brain is right now.”
She acknowledges it might be difficult at first.
“On the other hand, you need to hold space always for hope that there might be a new treatment or protocol that helps improve your functioning.”
One thing that might help is disability accommodations.
“In this time, they very likely have a disability and would qualify for accommodations at work or school. They might qualify for the disability benefits that they have through work or Social Security,” Sbrana said.
But there are barriers to getting those disability benefits. Many long COVID patients never received a positive COVID test because they were in short supply at the beginning of the pandemic. Still others are having trouble proving they have long COVID because their blood work is clean and other tests look normal.
Chronic Fatigue Syndrome And Psychotherapy
“Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds,” read the headline in the February 17, 2011 edition of The New York Times. Within a few days Chronic Fatigue Syndrome ranked third on Yahoo’s ‘Trending Now’ list. For the misinformed reader it’s likely these headlines translated that CFS is all in your head.
Until now, I’ve told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I’m actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure. I’ve now decided to come out of the closest — so to speak — because it’s ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it — and there are many more who have it than let on — the better off we all will be in the end.
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Nice Publishes New Guidance About Me/chronic Fatigue Syndrome
The National Institute for Health and Care Excellence has now published its new guidance on the diagnosis and management of myalgic encephalomyelitis /chronic fatigue syndrome .
The publication of the new guidelines follows a delay to the guidance earlier this year. At the time the Institute explained that this was due to the complexities surrounding the condition, meaning they had been unable to gain comprehensive agreement and support for their updated recommendations. This has now been resolved.
Commenting on the publication of the new guidelines, Natalie Beswetherick, director of practice and development at the Chartered Society of Physiotherapy, said:
It is very welcome that a consensus has been reached and the guidance can now be published after what has been an understandably fraught process.
It is vitally important that people living with ME receive personalised care that is built around their needs, especially where physical activity is concerned.
We were clear during the consultation phase and recent additional discussions that approaches that use fixed incremental increases in activity levels do not meet that criteria and should not be used.
The guidelines reflect this and I expect all those physiotherapists working with people who have ME/CFS to read the document, reflect on what this means for their practice and make any changes to their practice in light of the revised guidelines.
The Medical Community Is Changing Its Mind On Chronic Fatigue Syndrome Why Arent Insurers
A significant number of people diagnosed with Covid-19 report disabling symptoms that persist for months after they have cleared the virus that causes it. As Anthony Fauci, the director of the National Institute for Allergy and Infectious Diseases, has observed, symptoms experienced by post-Covid-19 patients are highly suggestive of those associated with ME/CFS. And like ME/CFS patients before them, many of these Covid-19 long-haulers report that health care providers have been similarly dismissive, automatically attributing their symptoms to stress, depression, and deconditioning, and recommending psychotherapy and exercise.
Medicine can be both wondrously innovative and stubbornly resistant to change. In 1847, the Hungarian physician Ignaz Semmelweis could not convince his fellow doctors in Vienna to wash their hands before delivering babies as a way to prevent often fatal cases of puerperal fever in new mothers. It would be another 30 years before Joseph Lister gained widespread acceptance for his approach to sterilization and aseptic surgery.
Things are better these days, with an average time lag of only 17 years before research evidence reaches clinical practice. The British psychiatrists and others still pushing graded exercise therapy and cognitive behavioral therapy for ME/CFS have done their part to keep the median delay as high as it is.
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Biomarker For Chronic Fatigue Syndrome Identified
Stanford scientists devised a blood-based test that accurately identified people with chronic fatigue syndrome, a new study reports.
Ron Davis is the senior author of a paper that describes a blood test that may be able to identify chronic fatigue syndrome.Steve Fisch
People suffering from a debilitating and often discounted disease known as chronic fatigue syndrome may soon have something theyve been seeking for decades: scientific proof of their ailment.
Researchers at the Stanford University School of Medicine have created a blood test that can flag the disease, which currently lacks a standard, reliable diagnostic test.
Too often, this disease is categorized as imaginary, said Ron Davis, PhD, professor of biochemistry and of genetics. When individuals with chronic fatigue syndrome seek help from a doctor, they may undergo a series of tests that check liver, kidney and heart function, as well as blood and immune cell counts, Davis said. All these different tests would normally guide the doctor toward one illness or another, but for chronic fatigue syndrome patients, the results all come back normal, he said.
A paper describing the research findings was published online April 29 in the Proceedings of the National Academy of Sciences. Davis is the senior author. Esfandyarpour, who is now on the faculty of the University of California-Irvine, is the lead author.
Me/cfs Support Groups There For Long Covid Sufferers
A Facebook Long Covid support group in New Zealand of over 200 members reflects increasing numbers with the disease.
Existing ME/CFS support groups in New Zealand are also in a position to offer immediate assistance too, although lack of funding limits the number they can help.
Vice-president of ME Auckland, Kate Duder Photo: Supplied/Kate Duder
“Our supports systems are a little stretched at the moment,” ME Auckland vice-president Kate Duder says.
“As a non-profit organisation we’re trying to secure more funding to be able to take on another client support co-ordinator to increase capacity, but we won’t turn Long-Covid people down when they come to us.”
Duder says, while Covid symptoms are largely similar to those of ME/CFS, another common experience has been the dismissive scepticism of some clinicians.
“We’ve realised we’re in a unique position to support people in Auckland with Long Covid, because we know how to help people with ME and a lot of the doctors don’t and from what I’ve heard a lot of the doctors are actually gaslighting Long Coviders as well and don’t know how to deal with their symptoms,” she says.
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Me / Chronic Fatigue Syndrome
- AXA1125 targets cell power plants that may be dysfunctional in long Covid patients with severe fatiguePublished: 3 Nov 2021
- Advocating for behavioural approaches means condition has been relegated to a psychological problem, campaigners sayPublished: 30 Aug 2021
- UK health standards body delays new ME guidance in therapy row
- Long Covid is highlighting conditions that have been around much longer than the pandemic. Ten readers share their experiencesPublished: 29 Jun 2021
- Other lives: Feminist, environmentalist and campaigner for social justicePublished: 25 May 2021
- Letter: Dr Dominic Salisbury says poor-quality evidence lies behind some treatments such as CBT Published: 29 Apr 2021
- Letters: There is a greater need than ever for measured, up-to-date information about this condition, writes Prof Michael Sharpe. Plus letters from Robin Davies and Prof Paul GarnerPublished: 16 Apr 2021
- Letters: Graded exercise therapy is not the right way to treat people with ME or long Covid, argue Dr Charles Shepherd and Rachel HardingPublished: 14 Mar 2021
- Letters: No trials of graded exercise have shown to harm patients, say Dr Alastair Miller, Prof Paul Garner and Prof Peter White, so those with post-Covid fatigue syndrome should not be discouraged from trying itPublished: 11 Mar 2021
Memory And Concentration Problems
Memory aids, like organizers and calendars, can help with memory problems. For people with ME/CFS who have concentration problems, some doctors have prescribed stimulant medications, like those typically used to treat Attention-Deficit / Hyperactivity Disorder . While stimulants might help improve concentration for some patients with ME/CFS, they might lead to the push-and-crash cycle and worsen symptoms. Push-and-crash cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt .
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Depression Stress And Anxiety
Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with ME/CFS develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for ME/CFS.
Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects. When healthcare providers are concerned about patients psychological condition, they may recommend seeing a mental health professional.
Some people with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies . These can reduce stress and anxiety, and promote a sense of well-being.
What Is The Treatment For Chronic Fatigue Syndrome
A treatment plan for CFS aims to relieve your symptoms to improve your quality of life. The plan should include:
- a plan for how to manage stress
- a very gentle exercise plan
- a nutritious diet, with regular meals/snacks to keep up your energy
- supplements if your diet lacks a good balance or if your blood tests indicate deficiencies
- a sleep management plan, which may include medication
- physiotherapy to help with pain and good breathing techniques
- medication for pain
- psychological input if you are particularly stressed or depressed.
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Chronic Fatigue Syndrome May Hold Keys To Understanding Post
The draft represents a welcome repudiation of a deeply flawed body of research that had been conducted by a prominent group of British psychiatrists and other mental health experts. Members of this group first developed the psychological and behavioral treatment approach for ME/CFS in the late 1980s. They have single-mindedly insisted on it ever since, disparaging critics who raised legitimate concerns about their research as anti-science zealots. In developing its draft, NICE reviewed the science and assessed the evidence from studies promoting graded exercise therapy and cognitive behavioral therapy to be of low or very low quality.
The NICE draft will undergo a six-week public comment period and further review, with a final version to be published in April. While revisions are possible, the draft itself has already been hailed as a major advance by ME/CFS patients and advocates in the U.K. and across the U.S. Since history shows that old habits die hard in primary care medicine, every new report based on an accurate evaluation of the science represents an important step toward educating well-meaning but poorly informed physicians.
Ironically, it has taken a pandemic to shine a brighter spotlight on ME/CFS.
Nearly Half Of All Long Covid Patients May Have Chronic Fatigue Syndrome
Around 1.2 million people in the UK are living with long COVID a condition where patients still experience symptoms from four weeks to over a year after catching COVID-19.
Some of the symptoms are consistent with what we know about COVID-19. The 39 per cent of long COVID cases that have shortness of breath could be linked to the damage the coronavirus can cause to lungs, while a third of people with long COVID still experience the loss of smell common with COVID-19 infection.
However, the most common long COVID symptom reported is fatigue, which has made some question whether the condition could in fact be the same as chronic fatigue syndrome .
Also referred to as myalgic encephalomyelitis , CFS is a long-term condition that makes people experience extreme fatigue, particularly after exercise, in addition to problems sleeping, bodily pain and confusion known as brain fog. Scientists still dont know what causes ME/CFS, but many patients onset of the condition follows infection with a virus or bacteria.
Until now, experts havent been able to confidently say whether ME/CFS is a part of long COVID. But a new study, by researchers at Icahn School of Medicine at Mount Sinai in New York, has tested 41 patients against ME/CFS diagnostic criteria.
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Mancini said there could be several subsets of patients with long COVID, including those who have ME/CFS-like symptoms.
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Researchers Discover Potential Therapeutic Approach To Treat Chronic Fatigue Syndrome
Researchers have discovered the pharmacological drug, Naltrexone, significantly restored the function of faulty receptors associated with myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome .
Researchers from the National Centre for Neuroimmunology and Emerging Diseases , Menzies Health Institute Queensland, Griffith University led the research, which has been published in the journal Frontiers in Immunology.
NCNED is the peak research center nationally and is internationally recognized for its world-leading research on the identification of the pathology, developing a screening test and pharmacotherapeutic intervention for ME/CFS.
NCNED researchers were the first in the world to develop the gold standard in experimental research known as patch clamp technique in immune cells to measure TRP receptor function.
The immune cells are used as a model for assessing TRP receptor function and reflect physiological activity in all body tissues expressing these receptors.
NCNED researchers have paved the way for the identification of the pathology of ME/CFS and biomarker development by further reporting in several recent research papers that these receptors were faulty from ME/CFS patients when compared to healthy people.
“This world-first discovery suggests new potential pharmaco-therapeutic interventions in ME/CFS,” co-author and Stafford Fox medical research professorial fellow Professor Sonya Marshall-Gradisnik said.
Explore further
Is Long Covid A New Type Of Chronic Fatigue Syndrome
Health organisations across the world are rushing to prepare for a wave of debilitating post-Covid-19 illness that we know little about.
Research in New Zealand into the post-viral condition known as Long Covid is now being carried out.
It is building on key insights from studies of another disease – Myalgic encephalomyelitis/Chronic Fatigue Syndrome – once maligned and often still neglected by the medical establishment.
ME/CFS has striking similarities to Long Covid in terms of symptoms and the demographic it affects.
Some experts are postulating Long Covid could be a sub-type of ME/CFS.
Those leading research into Long Covid here are looking to see if this is the case, while probing for a possible intervention to arrest the course of the disease.
So, could Long Covid be ME/CFS by another name and what could you expect to experience if you developed this type of post-viral disease?
Here’s what you need to know.
The World Health Organisation says one in four people will have symptoms a month from the onset of SARS CoV-2, and that one in 10 will be left with symptoms for more than three months.
The WHO’s case definition states the condition “occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually three months from the onset of Covid-19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis.
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‘huge Burden On Health System’
Tate says it is now incumbent on the Ministry of Health to fund post-viral illness support and research.
“I’m of course expressing a bias here, but these diseases are going to be a huge burden on the health system, on families, on the community. I think funding should be a given with the same priority as with Alzheimer’s disease. The number of people with Alzheimer’s probably about 50,000 now, only about twice as many as a ME, but there is a huge funding gulf.”
There is greater recognition of this internationally now with the emergence of Long Covid. The National Institutes of Health in the US has allocated $1.15 billion dollars towards Long Covid-19 research as the case numbers continue to rise in the United States and worldwide.
“It’s hoped that the ME/CFS community will be part of and benefit from that research,” Tate says.
A Department of Health spokesperson says it has commissioned a major piece of longitudinal research of people that had contracted Covid-19 in Aotearoa.
“Te Herenga Waka-Victoria University of Wellington has been awarded the contract for this research and is currently in the final stages of preparation, with participant recruitment likely to start soon.”
“We have also issued rehabilitation guidance for acute Covid-19 and are looking to update this to take into account Long Covid. We have completed a comprehensive literature review on the topic and are aiming to engage an expert advisory group to translate this into guidance.”
