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: Long Covid

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?

Treatments: Taurine supplement

ME Essential Spring 2024

I’ve just been reading some new research findings from a group in Canada who have found low levels of a chemical called taurine in people with Long Covid.

I’ve checked on the internet and found that taurine is being promoted as a treatment for fatigue and that you can purchase taurine supplements quite cheaply.

Could you explain what taurine is and does in the body and whether it could be a ‘breakthrough treatment ’for people with Long Covid and ME/CFS.

Research: DecodeME

ME Essential Summer 2023

I have developed ME after catching Covid-19 last year and have a few quick questions about the DecodeME study. Can I still sign up to participate? When will we know the results? Will I have access to information about my own DNA? Will the study also be including people with Long Covid?

 

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: 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?

Long Covid Research

ME Essential Winter 2022

A huge amount of money is being spent on research into the cause and treatment of Long Covid. Given all the overlaps between Long Covid and ME/ CFS are there any benefits emerging from Long Covid research that might also help people with ME/CFS? Or is it too early to draw any conclusions?

Treatment: Apheresis

ME Essential Summer 2022

Are you aware of a new treatment called apheresis that is being given to people with Long Covid? It is supposed to remove small blood clots that are involved in causing Long Covid. Some of the overseas clinics that are treating people with Long Covid are also offering apheresis to people with ME/CFS and I know of several people who have travelled abroad to have apheresis – with mixed results. So why isn’t apheresis also being made available to people with ME/CFS here in the UK?

Viral Infections: Reactivated

ME Essential Winter 2021

I’ve been reading some interesting new research which indicates that reactivation of viruses that lay dormant in the body after the initial infection could be a cause of Long Covid. The reasoning seems to be that Covid infection activates the body’s immune system and this results in the reactivation of viruses that have been lying dormant and harmless in the body but now become active again and are capable of causing symptoms. Given the overlaps between Long Covid and ME could this be happening here as well? And has any research been done into this in ME?

Long Covid: Vaccinations

ME Essential Autumn 2021

Long Covid seems to have a lot of symptoms in common with ME/CFS and I know that the MEA has been pointing this out since it soon became apparent that some people were not returning to normal health after catching Covid-19.

One of the important differences between Long Covid and ME/CFS appears to be how people with both conditions react to vaccinations. Those with ME/CFS often report an exacerbation of ME/CFS symptoms and this can sometimes be quite severe and persistent. But there are now numerous reports about people with Long Covid feeling a lot better after having a Covid-19 vaccination and in some cases even recovering from Long Covid. Do we know why this is occurring? And could it have any implications for ME/CFS?

Dysautonomia: Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (PoTS)

ME Essential Summer 2021

I keep reading about orthostatic intolerance, PoTS and postural hypotension and how they can all be symptoms of ME/CFS. But what do all these medical terms mean? What is going wrong? And are all these symptoms and syndromes related to each other?

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.
  • 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. 
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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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