MEDICAL MATTERS
- Medical Matters features questions asked by Members of the ME Association on health-related topics.
- Dr Charles Shepherd and the ME Association's other advisers answer these questions by sharing their expert knowledge.
- Medical Matters is based on the popular ‘Ask the Doctor’ series in ME Essential magazine.
- It is a free resource that supplements the detailed information contained in the full range of literature that can be found in the website shop.
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Questions in the Category: Disability
Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid
Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!
Vaccine Damage Payment Scheme
There was an interesting item on the BBC news ( https://www.bbc.co.uk/news/health-61898694 ) about the first payment being made under something called the vaccine damage payments scheme (VDPS) to the relative of someone who had suffered a fatal adverse reaction to the Oxford Astra Zenca COVID-19 vaccine.
The BBC article also referred to a lady who “…..was unable to work for a year after developing VITT (vaccine-induced immune thrombotic thrombocytopenia) and struggles with chronic fatigue, migraines and brain fog and fears her job could be at risk – but believes she will not be considered 60% disabled”.
As someone who has had a significant and prolonged (now over a year) relapse of ME following this vaccine do you think it is worth making a claim? And does this scheme also cover people who have developed ME after other types of vaccination?
Functional Limitations: Limb Movement and Use
A friend of mine has had severe ME/CFS for several years and been totally bedbound for the last three. At the beginning of March, within the space of about forty eight hours, she suddenly lost most of the normal functioning and strength of her arms and hands. By turns, depending on which arm had been used the more, first one and then the other hung useless and intermittently painful by her side for a few days. She has since regained some of what she lost but the improvement now seems to have plateaued off. Her fingers remain swollen, she can barely hold a pen to sign her name and needs both hands to operate the switch of her bedside lamp. We surmise that these difficulties may have their origin in inflammation of nerve cells but we are aware that this cannot be proved. We would like to know whether similar problems have been documented in other cases and, if so, whether there is any treatment that has been found helpful.
Employment: Ill-Health Early Retirement
I am facing a big dilemma at work. I’m in my early fifties, have had ME for nearly seven years, and have managed to gradually return to part-time work. I normally enjoy my work but I’ve had real problems trying to obtain some reasonable modifications to the duties I perform. The occupational health department has been supportive but my employer has not been helpful. So I am now really struggling and considering whether I should consider taking early retirement on the grounds of permanent ill health. Is there any guidance you can offer on taking early retirement based on what I assume must be a situation that many other people with ME have to face at some point.
Disability Classification
How does the government define a disability? Does the government classify ME/CFS as a disability? I ask because I assume that this could have important implications for people who are having problems with benefits, education or work.
ME/CFS Prognosis
There is conflicting information about what happens to people with ME. My GP thinks most people get better – although it may take a couple of years! But if you look at internet discussion groups most people believe that while some people will improve nobody ever returns to full normal health. What is the truth?
Dr Charles Shepherd
Dr Shepherd has been Trustee and Hon. Medical Adviser to the ME Association for more than 40 years. He is integral to the charity's activities and provides information and support based on his professional knowledge, personal experience as a doctor with ME/CFS, and the understanding gained from helping many thousands of people with the condition. He was a member of the comittee responsible for the 2021 NICE Clinical Guideline and is a recognised expert on ME/CFS in the UK. His knowledge extends to Post-Viral Fatigue Syndromes (PVFS), Myalgic Encephalopathy/Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Post-Acute Sequelae of SARS-CoV-2 infection (PASC) or Long Covid.
If you have questions about ME/CFS or Long Covid, you can:
- Review the free information in the What is ME/CFS? section of the website, and the free Covid-19 and Long Covid information in the website shop.
- Review the largest range of literature covering all aspects of living with ME/CFS. Download detailed information about symptoms, diagnosis, management, co-mordities, employment, education, related health conditions, The 2021 NICE Clinical Guideline, welfare benefits etc.
- Join the ME Association as a member and you'll receive the highly-rated ME Essential magazine, and you can ask questions of the charity’s expert advisers including Dr Shepherd.
- Contact us via the ME Connect Telephone Helpline (open 365 days a year) and speak to one of the national team of fully-trained volunteers who waiting to provide information and support.
- Contact us via email or social media: Facebook, Instagram, Twitter, LinkedIn.
Medical Matters is based on the popular ‘Ask the Doctor‘ series featured in the highly-regarded member’s magazine, ME Essential, and in the healthcare professional magazine, ME Medical. Both are produced by the ME Association and published as hard-copy magazines every 3 months and sent to members and healthcare professionals by post to home or business addresses.
If you are an HCP you can sign-up here to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).
Please note: The answers comprising Medical Matters were accurate at the time of printing. A publication date accompanies all listed entries. We will endeavour to keep Medical Matters updated as information changes, but if you would like to comment, please email: meconnect@meassociation.org.uk
MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.