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: Medications

Treatments: Ampligen

ME Essential Spring 2023

I know that you have answered questions about the failure of people in the UK to have access to Ampligen – a drug that has immunomodulatory actions and is used to treat ME/CFS by some doctors in the USA. However, I’ve been told that the drug regulatory authority in America (the FDA) has now approved its use in treating Long Covid. So does this mean that doctors in the UK can now start prescribing Ampligen?

Treatment: Bromelain

ME Essential Winter 2022

I have read several newspaper articles about the use of this natural plant-based treatment for pain relief, especially in arthritis and muscle soreness. But is there any evidence that it can help to reduce muscle pain in ME? Because none of the drug treatments that I have been prescribed by my GP have helped.

Care and Support Plans

ME Essential Winter 2022

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?

Osteoporosis

ME Essential Summer 2022

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?

Symptom: Palpitations

ME Essential Winter 2021

Like many people with ME I have occasional palpitations. Does this mean that I might have some form of underlying heart disease? Or is this just another part of having ME? And are there any drug treatments that might be helpful?

Symptom: Vivid Dreams

ME Essential Summer 2021

Are vivid dreams a recognised symptom of ME? Like most people with ME I have unrefreshing sleep and sometimes wake up in the night. But I’ve recently been waking in the middle of the night with very clear memories of rather bizarre vivid dreams. Fortunately, nothing frightening has happened so far!

Treatments: Prescribed Drugs and Informed Consent

ME Essential Winter 2020

In addition to ME/CFS I have developed both arthritis and osteoporosis and now require drug treatment for these two conditions. I was recently prescribed a new and fairly powerful drug that soon exacerbated a number of my ME/ CFS symptoms. However, I received no warning that this was something that could happen. As a result, the drug had to be stopped and changed to another one that I was able to tolerate. This upset might have been avoided if my doctor had also considered the potential side-effects a bit more carefully, and discussed them with me, before writing the prescription. Why doesn’t this happen?

Symptom: Nerve Pain

ME Essential Winter 2020

Like most people with ME/CFS, pain is a fairly constant and frustrating symptom. But this has become more persistent and severe over the past few months. My GP has prescribed various pain relieving drugs – including low doses of amitriptyline and gabapentin – none of which has had much effect. As well as the pain, which often has a burning quality to it, the areas around it sometimes feel numb and strange. I’m starting to feel quite depressed as a result – is there anything else that could be done to help?

Treatment: Dementia Drugs

ME Essential Autumn 2019

Cognitive dysfunction, involving significant and progressive problems with normal mental functioning, is obviously the main symptom of dementia/Alzheimer’s disease. I understand that there are a growing number of drugs that can be used to treat dementia. Could any of these drugs also be used to treat similar aspects of ME/CFS? And have any clinical trials taken place?

Treatment: Rituximab

ME Essential Spring 2019

Like everyone else, I was very disappointed to learn that the big clinical trial that had been carried out in Norway had failed to show any evidence of benefit for rituximab in ME/CFS. However, the doctors involved do not appear to have published a paper outlining what happened and explaining whether this is now the ‘end of the road’ for what appeared to be a very promising treatment that was actually aimed at the underlying disease process. Surely it would be a helpful to know why the trial failed and what lessons might be learnt.

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.
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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 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.

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