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: Mobility
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?
PIP – what is the success rate?
Thanks to the very helpful MEA information leaflet on how to apply for a personal independence payment (PIP), my claim was successful. But I keep hearing about people with severe ME/CFS who have not been successful in claiming either a PIP care or mobility component. Is there any DWP information on success rates?
Care and Support Plans
I very much welcome the recommendation in the new NICE guideline that everyone with ME/ CFS should have a personalised care and support plan. But is this actually happening in practice anywhere? I have been under the care of both my (very good) GP and a hospital-based ME/ CFS service for several years. But nobody has ever offered to prepare such a plan. And if I did have a care and support plan, who would prepare it and what would it consist of?
Blood: Clots (Thrombosis)
Are people with ME more likely to develop blood clots? I ask because I am due to go into hospital for some quite major surgery and will be fairly immobile for some time afterwards. The hospital consultant has queried whether people with ME are at increased risk from developing blood clots. I also understand that blood-thinning drugs are sometimes given after an operation to people who have risk factors for developing blood clots.
Osteoporosis
I have several family members who have developed osteoporosis (thinning of the bones) in later life – some of whom have had nasty fractures as a result – and I understand that people with ME may be at increased risk of developing osteoporosis.
Why is this? Is there anything we can do to reduce this happening? And is there any treatment for osteoporosis?
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:
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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).