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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The comment section is horrendous.
Third of ME cases 'wrongly diagnosed': Experts says thousands thought to have chronic fatigue actually have similar condition that can be treated
- ME affects around 250,000 people in the UK and is difficult to diagnose
- Symptoms can include tiredness, mood swings and memory problems
- Many people could in fact be suffering from postural tachycardia syndrome
- This condition can be treated with medications and lifestyle changes help too
Doctors could be misdiagnosing up to a third of suspected cases of ME.
Professor Julia Newton said many of those thought to be suffering from chronic fatigue are in fact suffering from postural tachycardia syndrome or PoTS.
Unlike ME, this condition can be treated with a variety of medications and doctors suggest lifestyle changes can help as well.
ME, which affects around 250,000 people in the UK, has long proved difficult for doctors to diagnose.
In the absence of a reliable clinical test, they often rely on detecting symptoms such as tiredness, mood swings and memory problems.
But Professor Newton, from Newcastle University’s institute for ageing and health, said around 80,000 ME sufferers may have PoTS.
Around 110,000 people are thought to be affected by PoTS, which involves an abnormality in the nervous system. Also difficult to diagnose, it can be treated with a range of medication including beta blockers.
‘I would think that around one third of people with chronic fatigue syndrome, if they were properly tested, would have PoTs,’ Professor Newton told the Telegraph [see HERE]...
Because it is so difficult to diagnose, doctors usually classify it as sudden tiredness lasting more than six months that is not explained by another illness, exercise or hard work.
Previous studies have suggested that three quarters of ME sufferers have lost their job because of the condition and 2 per cent cannot leave their homes.
Sonya Chowdhury, chief executive of the charity Action for ME, told the Mail last night: ‘The findings are really interesting. We know that misdiagnosis is a big issue and are aware of the association with PoTS.
‘GPs and other healthcare professionals regularly tell us about the difficulty in they have in diagnosing ME and the need for much more research into and education about the nature of ME.’
As there is no cure for ME, patients are given treatments including painkillers for muscle ache and behavioural therapy and exercise therapy.
They are often advised to avoid alcohol, caffeine, sugar and sweeteners in case they make their symptoms worse.
Last year former EastEnders actress and Love Actually star Martine McCutcheon, 38, told about the seven years of her life she has lost to the illness.
Read more: http://www.dailymail.co.uk/health/a...tigue-actually-similar-condition-treated.html
Russ has started a new thread on this:A very similar article is in the Daily Mail:
http://www.dailymail.co.uk/news/art...tigue-actually-similar-condition-treated.html
They're taking a very Oxford approach in the Daily Mail article, and only mentioning BPS treatments.
ME: one third of patients 'wrongly diagnosed'
A third of patients with Chronic Fatigue Syndrome, or ME, may be suffering from a treatable illness known as PoTS, a professor claims
http://www.telegraph.co.uk/science/...-one-third-of-patients-wrongly-diagnosed.html
BMJ Open 2014;4:e004127 doi:10.1136/bmjopen-2013-004127
Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective
- Cardiovascular medicine
Claire McDonald1, Sharon Koshi1, Lorna Busner2, Lesley Kavi2, Julia L Newton1
Correspondence to Professor Julia L Newton; J.L.newton@NCL.AC.UK
- Received 27 September 2013
- Accepted 11 October 2013
- Published 16 June 2014
Abstract
Objective
To examine a large UK cohort of patients with postural tachycardia syndrome (PoTS), to compare demographic characteristics, symptoms and treatment of PoTS at one centre compared to the largest patient group PoTS UK and to verify if their functional limitation is similar to patients with chronic fatigue syndrome (CFS).
Design
A cross-sectional study assessed the frequency of symptoms and their associated variables.
Patients and setting
Two PoTS cohorts were: (1) recruited via PoTS UK, (2) diagnosed at Newcastle Hospitals National Health Service (NHS) Foundation Trust 2009–2012.
Patients with PoTS were then compared to a matched cohort with CFS.
Main outcome measures
Patients’ detailed demographics, time to diagnosis, education, disability, medications, comorbidity and precipitants.
Symptom assessment tools captured, Fatigue Impact Scale, Epworth Sleepiness Scale, Orthostatic Grading Scale (OGS), Hospital Anxiety and Depression Scale, Health Assessment Questionnaire, Cognitive Failures Questionnaire.
Results
136 patients with PoTS participated (84 members of PoTS UK (170 cohort; 50% return) and 52 (87 cohort; 60%) from Newcastle Clinics).
The PoTS UK population was significantly younger than the clinic patients, with significantly fewer men (p=0.005).
Over 60% had a university or postgraduate degree. Significantly more of the PoTS UK cohort were working, with hours worked being significantly higher (p=0.001).
Time to diagnosis was significantly longer in the PoTS UK cohort (p=0.04).
Symptom severity was comparable between cohorts. The PoTS total group was compared with a matched CFS cohort; despite comparable levels of fatigue and sleepiness, autonomic symptom burden (OGS) was statistically significantly higher.
The most common treatment regime included β-blockers. Overall, 21 treatment combinations were described. Up to 1/3 were taking no treatment.
Conclusions
Patients with PoTS are predominantly women, young, well educated and have significant and debilitating symptoms that impact significantly on quality of life.
Despite this, there is no consistent treatment.
Full paper follows: http://bmjopen.bmj.com/content/4/6/e004127.full
Nearly all ME patients have orthostatic autonomic dysfunction, but a relatively small minority have tachycardia. Most have hypotension or narrow pulse pressure instead (though tachycardia can then occur to help compensate for reduced circulation).Newton previously reported much higher rates of autonomic dysfunction in ME/CFS patients (as have other researchers - in some cases 100%).