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: Occupational Therapist
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?
ME/CFS Specialist Services
The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?
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!
Caring: Severe ME/CFS
I’m becoming increasingly concerned about the situation that my sister and her husband find themselves in. They are both in their mid-sixties and both have non-ME/CFS health problems. They are also looking after their son – who is in his mid-thirties and has had ME/CFS for well over 10 years – with no other practical or financial help. Their son’s state of health has steadily declined in the past year. He no longer works, is largely housebound and is dependent on his elderly parents for most of his care. Like so many other people with severe ME/CFS, he has lost most of his friends and has very few visitors. My main concern is that his parents are finding it increasingly difficult to cope. The GP doesn’t know what to do and I sense that only some form of crisis will make things happen. Do you have any suggestions or do they just have to carry on till the point where they can no longer cope?
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.
- Contact us via email or social media:
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).