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: Treatment

Treatments: Alzheimer's medication

ME Essential Spring 2024

A vast amount of money is being spent on research into Alzheimer’s disease and dementia. This has resulted in significant progress being made in finding both the cause and effective forms of treatment for dementia.

Now that there are drugs available that can help to slow down the progress of memory decline in Alzheimer’s disease could some of these drugs also be helpful for treating cognitive dysfunction in both ME and Long Covid?

Alternative treatments: Flotation tank

ME Essential Winter 2023

A friend of mine who has a painful rheumatic disease has been using a local floatation tank to help relieve her pain. I have quite a lot of ME related joint and muscle pain and the drugs that have been prescribed are of very limited benefit.

Is this something that’s worth trying for pain in ME? Are there any potential side-effects?

Symptoms: Post-Exertional Malaise (PEM)

ME Essential Summer 2023

What is Post-Exertional Malaise and how can it best be managed? 

Treatment: Hyperbaric Oxygen Therapy (HBOT)

ME Essential Summer 2023

Has there ever been a clinical trial to assess the use to hyperbaric oxygen (HBO) in ME?  I know that HBO is being used by people with multiple sclerosis as well as ME – so it seems that there are positive effects in the case of neurological diseases. I’ve also read that a clinical trial involving people with Long Covid has found some beneficial effects.

Treatment: Modafinil

ME Essential Summer 2023

I have had PoTS and ME/CFS for over 10 years and now have Long Covid as well – if that’s even possible as perhaps they are the same thing anyway? My question is about a drug called Modafinil as I have been offered a trial of this treatment from my PoTS consultant to help with my fatigue. I have looked online and can’t find a lot regarding its use in patients with ME/CFS. Please could you point me in the right direction for any research on this or anyone with ME/CFS that has any experience of taking it. One of my main concerns is that it will create a false energy high, so that I will want to do more, then I will end up with worse PEM and crashing. Another potential problem is that I already have mental-health issues as some of the side-effects are mental-health related.

Treatments: Unproven Claims

ME Essential Spring 2023

Looking around the internet I was surprised and disappointed to find a whole range of companies and therapists selling treatments and ‘recovery programmes' that they claim can successfully be used to treat or even cure ME/CFS. Some of these companies are clearly making a lot of money out of desperate people who are willing to try anything that is claimed to help. What can be done to stop these scams?

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?

Hyperparathyroidism

ME Essential Spring 2023

Many symptoms of Hyperparathyroidism are similar to ME/CFS and Fibromyalgia. Would a GP be able to recognise hyperparathyroidism and what are the treatment options?

Treatment: Probiotics

ME Essential Winter 2023

Having read about the new research which is looking at the possibility that the gut may be involved in ME/CFS, is there any point in using probiotics as a form of treatment? I have a number of bowel symptoms that my doctor says are due to irritable bowel syndrome – but I haven’t had much success with the treatment he has recommended so far.

Treatments: Antibiotics

ME Essential Winter 2022

Please could you provide some guidance on the use of antibiotics if you have ME/CFS. I’ve read about people on internet discussion forums who have been prescribed antibiotics as a treatment. On the other hand, some people say that antibiotics are best avoided if you have ME/CFS.

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.
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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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