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

Treatment: Ampligen

ME Essential Summer 2022

I have read a lot of information about the use of a drug called Ampligen on the internet. While it is being given to people with ME in America it does not appear to be available here in the UK My understanding is that Ampligen is being used by a number of doctors who specialise in ME in America and that some people with ME have gained considerable benefit. When I asked my GP about Ampligen he knew nothing about it and did not want to even look at the information I took to the consultation, or investigate further. Even if it means paying privately I would like to give Ampligen a try. I am prepared to accept that it may not work and that it does have side-effects.

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.

Treatments: Drugs – Sensitivities & Side-effects

ME Essential Autumn 2018

This is more of a warning than a question. Earlier this year I experienced a rapid and noticeable deterioration in the fatigue part of my ME/CFS. I was also getting muscle cramps - a new symptom to add to the list. All of this coincided with a prescription from my doctor for water losing tablets (diuretics) to treat high blood pressure. At first, she didn’t think there was any connection. But after doing some blood tests it turned out that I had a low level of potassium - something that can occur as a side-effect of using this type of drug. After a change in medication, my potassium level returned to normal and my ME/CFS symptoms also improved. So it’s worth noting that drugs can sometimes cause a significant exacerbation of symptoms for people with ME/CFS.

Treatment: Drugs and Weight Gain

ME Essential Spring 2018

Although taking a low dose amitriptyline has been very useful in reducing some of my pain and helping to correct my very erratic sleep pattern (frequent wakening during the night) I’ve put on a considerable amount of weight since taking this drug. My GP says that weight gain is a well recognised side-effect with this type of drug and that it can also occur with other drugs that are used for pain relief. I know from talking to other people with ME that weight gain can be a major problem with some drug treatments for ME. But why is this so? And are there any solutions?

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.

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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: contact@meassociation.org.uk

MEDICAL DISCLAIMER

Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.

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