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
Employment dispute
I have been fortunate and reached a point where my condition has improved and been stable for some time. So I feel confident enough to try and return to my job on a part-time but flexible basis. I have discussed this with my GP and the occupational health department at work – both of whom agree that a phased return to work would be worth attempting. I have also had what I thought was a sympathetic appointment with the HR (human resources) department of the large company that I work for. However, I have now received a written summary of the proposed adjustments to the work I do and the way in which they intend to reduce and adjust my working hours – which are both OK.
Although the immediate reduction in hours on return is perfectly reasonable, my employers are working on what I believe is a totally unrealistic idea that I will return to work on a part-time basis and then progressively increase my hours over the next two to three months. They don't seem to understand that any further improvement or adjustment to returning to work if you have ME/CFS is going to be slow and unpredictable. So their plan for a rather inflexible and progressive increase in hours of work could actually cause a relapse in my condition.
What can I do apart from change my mind about trying to return to work?
Aids and adaptions
I have moderate to severe ME which has been relatively stable for quite some time. I live in a house with a difficult flight of stairs – so my family and I have decided that it would be better for me to also use a downstairs room. This would make life a lot easier for everyone and, as the room overlooks the garden, it would help to brighten up my day! I also use a wheelchair occasionally when outdoors.
My question, which is partly an observation, is that when we have tried to obtain support from an occupational therapist (OT) regarding the use of aids, a blue badge and home adaptions, including the outdoor wheelchair, the response has always been quite negative. I've even been told that going down the route of obtaining, and then relying on aids and adaptions, is going to “hamper my mobilisation and recovery”.
Is this something that happens to other people? And is there anything I can do?
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-mordidities, 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.
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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 a Health Care Professional you can sign-up to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).