How Long Does Chronic Fatigue Syndrome Last
Chronic fatigue syndrome is a fluctuating condition in which your symptoms can change unpredictably in nature and severity over a day, week or longer. The impacts are variable in severity, but can involve flare-ups and relapses even if symptoms are well managed.
There is no test to diagnose the condition. The diagnosis is made in people who have a certain set of symptoms .
Chronic Fatigue Syndrome / Me
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We see patients aged up to 18 with Chronic Fatigue Syndrome /ME and help patients and families manage their symptoms and improve.
Our team helps families look at routines, sleep, activity and exercise, returning to school and medication.
CFS/ME is a condition that causes long-term, disabling tiredness. No one knows why it happens or what causes CFS/ME.
Some young people have mild symptoms, whereas others are more severe. Your doctors will have checked that there is no other explanation for your symptoms.
What Is The Latest Treatment For Chronic Fatigue Syndrome
Sadly Western medicine continues to seek treatment solutions only for parts of chronic fatigue symptoms. Happily, TCM has solutions based on over 2000 years of experience in treating these symptoms.
I firmly believe that Traditional Chinese Medicine is the only chronic fatigue syndrome treatment I recommend, for several reasons.
In the end, it is about curing not simply managing your Chronic Fatigue Syndrome and you will not be able to do that by managing parts of it with Western medicine. Only Traditional Chinese Medicine treats the whole of any persons CFS.
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Complementary And Alternative Medicine
CFS/ME patients tend to use more alternative medicine treatments than people without . Patients often leave orthodox medical care because they feel that their condition has been unjustifiably attributed to psychological causes: they are given the message that it is all in the mind. In a twin study, 91% of twins with CFS/ME and 71% without CFS/ME used at least one alternative treatment. A large proportion of the study participants stated that alternative treatments were helpful .
Other Lifestyle Changes To Manage Me/cfs
Other ways to manage ME/CFS include:
- equipment â some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home
- changes in your place of work or study â when you’re ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return
There’s limited or no evidence to recommend:
- resting completely â there’s no evidence this helps
- complementary medicine â there is not enough evidence that it’s helpful for ME/CFS
You should not take up vigorous unsupervised exercise such as going to the gym or for a run as this may make your symptoms worse.
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Who Is At Risk For Chronic Fatigue Syndrome
Because the cause of CFS is not known, its hard to know what might put someone at risk for getting the condition. However, certain factors are seen more often in people with CFS. These factors include:
- Gender. CFS happens up to 4 times more often in women than in men.
- Age. CFS commonly affects middle-aged people, but people of any age can get it.
Addressing Low Thyroid Hormone Function
In Prolonged Critical Illness
As described above , clinicians began, as early as the 1970s, to suggest thyroid hormone supplementation for critically ill patients. The rationale was to correct what some considered a maladaptive hypo-metabolic state which was preventing recovery following severe infection or injury . Again, this approach remains controversial . Interestingly, there has been little research into pharmacological agents to correct the peripheral mechanisms, which to a large extent underpin the low thyroid hormone function during critical illness: i.e., the alterations in cellular thyroid hormone transporters, receptors, and deiodinases that convert thyroid hormones into their active and inactivated forms. Targeting these deiodinases could theoretically be an avenue for alleviating low thyroid hormone function during prolonged critical illness .
In ME/CFS
As described above, there are accounts of positive effects of thyroid hormone supplementation to address low thyroid hormone function in euthyroid ME/CFS and fibromyalgia . Proponents generally believe that thyroid hormone supplementation serves to compensate for dysfunctions in the conversion of thyroid hormones and/or uptake at cellular level , notably associated with inflammation in ME/CFS or fibromyalgia .
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What Is The Outlook
The long-term outlook for chronic fatigue syndrome varies from person to person. Although some people recover or have a long period of remission, many will need to adapt to living with /CFS. The outlook is better in children and young people than in adults.
Chronic fatigue syndrome affects everyone differently and its impact varies widely. For some people symptoms still allow them to carry out some activities, whereas for others they cause severe impacts on different aspects of the lives of people with CFS and their families and carers, including activities of daily living, family life, social life, emotional well-being, work and education.
Why Is This Important
The new research finds many CFS/ME patients feel unsupported by health professionals, which can make the illness all the more distressing. Patients want to be listened to, have their symptoms believed and be given realistic support that takes their life circumstances into account. They also want their beliefs about CFS/ME to be acknowledged, even if they are different to current medical theories. However, the study also found that views about the condition are highly polarised. This means it is challenging for professionals to provide the kind of care people want for CFS/ME.
The researchers suggest healthcare professionals should give personalised, empathetic care to their CFS/ME patients, and suggest treatments that minimise the impact on daily life. They say health professionals should provide a sense of safety. This way, patients may feel more able to work through complex issues, such as the mental health implications of CFS/ME, without feeling defensive or dismissed.
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Comparison With Previous Literature
The best comparators for our real world results are the results reported by the PACE trial of cognitive behaviour therapy and graded exercise therapy for adults with CFS/ME. The PACE trial showed a reduction in mean fatigue from 28 points at randomisation to 20 points at 12 months , followed by a slight further reduction at 31 months follow-up . This is very similar to the trend observed in our data. PACE reported larger improvements in physical function than observed in our study, a difference between trial and real world outcomes which we found previously in an analysis of routinely-collected data . The proportions of PACE trial participants who rated their overall health as very much or much better at 12 and 31 months were 41% and 4248%, respectively, compared with 28% and 30% in our study .
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Case Presentation: Case 1
A white British female, now aged 63 , developed viral meningitis with accompanying vomiting leading to severe dehydration in 1988 when aged 33. She had previously been well and working as a general practitioner. Viral meningitis was diagnosed by lumbar puncture and again 6 weeks later on repeat hospital admission. She remained extremely unwell, being bed bound and unable to self-care, with profound weakness and fatigue, general malaise, light and sound sensitivity, repeated dizziness causing collapse, persistent anxiety and widespread pain. Although she improved slowly over the next 5 years, she was only able to return to work on a limited basis, still suffering headaches, fatigue, postexertional malaise and frequent migraine attacks characterised by vomiting and visual disturbances.
Following gastroenteritis in 1999, she again became bed bound and unable to self-care. Improvement was slower than the initial illness, and after 5 years she was still dependent on carers and used a motorised wheelchair when outside. She developed multiple food intolerances, shown on blood tests and confirmed by repeated withdrawals and reintroductions of intolerant foods. She showed a more dramatic response to wheat, even small amounts, characterised by nausea, severe headache, rapid heart beat and collapse within 10min of consumption, followed by a week of reduced energy and absolute constipation.
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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Case Presentation: Case 3
A white British male sustained a head injury when 7 years old and was diagnosed with glandular fever when 10 years old. He developed severe tonsillitis in 1996 when 14 years old. His symptoms gradually worsened and he became bedridden and unable to self-care, suffering profound fatigue, headaches, excessive day and night sleeping and light and sound sensitivity. He was diagnosed with chronic fatigue syndrome by a hospital paediatrician in 1997. He gradually improved over the next 3 years with increased energy. By his mid-20s, he was able to work full time although with persistent tiredness and recurrent infections. He improved further by practising pacing, listening to body symptoms to control his activity and by changing jobs to one with flexible working hours, which he continues to this date. He continued to experience difficulty sleeping and recurrent colds, at least four per year, accompanied by energy dips and subsequent depression. He was diagnosed with nasal polyps, sinusitis and seasonal allergic rhinitis.
The Cortene Way: New Drug To Be Trialed In Chronic Fatigue Syndrome Me/cfs Soon
by Cort Johnson | Feb 8, 2018 | Brain, Cortene, Homepage, HPA axis, Treatment |
Research funding for chronic fatigue syndrome has been poor at best but clinical trials have elicited a wholly different degree of disappointment altogether. Few clinical trials are ever done and those often involve alternative approaches. The six active clinical trials listed in clinicaltrials.gov, for instance, include treatments like acupuncture, moxibustion, oral rehydration and CoQ10.
That makes it shocking to see a new drug a drug not being used in other diseases get a clinical trial in ME/CFS. It wasnt supposed to happen this way. First, its been assumed that repurposed drugs drugs already in use in other disease would be tested in ME/CFS to improve symptoms and only later, as we understood the disease better, would we get to a drug that gets at the core problems in ME/CFS. This group believes they have a drug that gets at the core of ME/CFS now, and in the first quarter of this year they expect to test that drug.
Over the next month, Health Rising will be publishing a 3 or 4-part blog series telling the story of the small group of researchers that are bringing a drug to ME/CFS they believe could get at the core of this disease.
Rather shockingly, a new drug a drug not being used in any other disease will soon be tested in ME/CFS.
- Part I Beginnings and the Hypothesis
- Part II The Hypothesis Pt. II
- Part III Treating ME/CFS and the Clinical Trial
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What Is Chronic Fatigue Syndrome
Chronic fatigue syndrome , also referred to as myalgic encephalomyelitis , is a condition that causes marked long-term tiredness and other symptoms which are not caused by any other known medical condition.
- CFS stands for chronic fatigue syndrome. Chronic means persistent or long-term.
- MEstands formyalgic encephalomyelitis. Myalgic means muscle aches or pains. Encephalomyelitis means inflammation of the brain and spinal cord.
Chronic Fatigue: It Is Time To Take Its Treatment More Seriously
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One in four consultations in primary care involve fatigue its the most common reason why people go to see their GP, says Julia Newton, a consultant physician with an interest in fatigue at Newcastle upon Tyne Hospitals NHS Foundation Trust.
At least 250,000 people in the UK live with myalgic encephalomyelitis/chronic fatigue syndrome , a long-term neurological disease with a wide range of symptoms, including debilitating pain, fatigue and crashes after activity known as post-exertional malaise. And self-reported data indicate that 50% of people with chronic conditions such as rheumatoid arthritis, cancer, Parkinsons disease, or multiple sclerosis struggle with tiredness. Despite that, theres very little research, points out Newton.
Lack of funding has left fatigue science decades behind the scientific understanding of other chronic symptoms, such as pain.
In part, this is owing to the heterogeneity of how fatigue is experienced. On top of presenting across multiple conditions, it can be emotional, physical, cognitive or motivational in nature, and varies from person to person even from day-to-day for the same patient . This diversity means conducting research can be a tricky and unattractive investment.
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Uk Health Standards Body Delays New Me Guidance In Therapy Row
Charities dismayed as move to stop recommending graded exercise therapy is opposed by some medical groups
The National Institute for Health and Care Excellence has withdrawn long-awaited landmark guidance on ME hours before its planned publication amid a backlash from medical groups.
Charities and patient groups fighting for greater recognition of the poorly understood condition as a medical illness rather than a psychological problem had welcomed the planned guidance, which was due to stop advising doctors to administer a controversial therapy.
This disputed therapy, called graded exercise therapy , involves incremental increases in physical activity to gradually build up tolerance. Patient groups have argued its use suggests those with ME have no underlying physical problem but are having symptoms due to inactivity.
Myalgic encephalomyelitis , sometimes known as chronic fatigue syndrome, is thought to affect about 250,000 people in the UK and has been estimated to cost the economy billions of pounds annually. Characterised by pain and a long-term debilitating loss of energy, it affects one in four sufferers so severely that they are unable to leave the house and, frequently, their bed.
Other symptoms can include mental fogginess, light and noise sensitivities and trouble with memory and sleep. No specific treatment exists, although GET and cognitive behavioural therapy have been used in an attempt to manage symptoms.
Nice Me/cfs Guideline Outlines Steps For Better Diagnosis And Management
NICE has today published its updated guideline on the diagnosis and management of myalgic encephalomyelitis /chronic fatigue syndrome .
28 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
Paul Chrisp, director of the Centre for Guidelines at NICE, said:As well as bringing together the best available scientific evidence, weve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart. NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented.
Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, said: This guideline will provide clear support for people living with ME/CFS, their families and carers, and for clinicians. It recognises that ME/CFS is a complex, chronic medical condition that can have a significant effect on people’s quality of life.
People with ME/CFS should receive individually tailored support focused on personal agreed goals and a range of approaches should be used depending on the patient’s preferences and priorities.
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The Missing Piece In New Treatment Guidelines And Research Priorities For Me/cfs
In the UK, more than 250,000 people have Myalgic Encephalomyelitis / Chronic Fatigue Syndrome , a devastating illness that is estimated to cost the British economy £3.3 billion per year . Although ME/CFS has long been maligned, three recent publications herald a dramatic change in the way it will be understood and treated in the UK.
As Ingrid Torjesen explains in her article ‘Health secretary pledges more ME/CFS research as he reveals that relative has condition’, the new NICE Guideline for ME/CFS encourages a shift away from psychological and behavioural treatments. Consistent with this, research priorities published last month call for a focus on biological mechanisms, diagnostic tests, and the development of medical treatments. Finally, the recent All-Party Parliamentary Group report outlines clear expectations of, and support for, a transformation in the way ME/CFS is addressed in research, clinical practice, and social care.
Largely ignored in all three documents, however, are unpaid carers . The vast majority of people with ME/CFS rely on their families for care and many of those families have been the driving force behind the changes to research and treatment that are now unfolding.
-In loving memory of Maeve Boothby ONeill, 27, for whom change came too late-
Competing interests: No competing interests
08 June 2022
