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
Is ME a post-acute infection syndrome (PAIS)?
I see that ME and Long Covid are now sometimes being referred to as being a post-acute infection syndrome. Why is this?
And following on from this question, one important action in the generally disappointing research section of the DHSC Delivery Plan is to fund research into post-acute infection syndromes. So is this good or bad news for people with ME if we are going to be lumped in together with all kinds of post-infective conditions?
Do I have Long Covid or post Covid ME?
Two years ago I was very fit and healthy young adult. I then caught Covid. It was more like having a very bad cold and flu combined. I was managed at home with online GP consultations and didn’t have any serious chest problems. So I don’t have a persisting cough or breathlessness. My main symptoms are very similar to ME – debilitating fatigue, brain fog, muscle pain, problems with temperature control and post-exertional malaise.
My doctor has diagnosed Long Covid. But do I really just have post Covid ME?
Long Covid breakthroughs
I have now been suffering from quite severe Long Covid for over three years. I didn’t have a severe Covid infection at the time and was largely self-managed at home with just a few online consultations with my GP.
I’m very grateful for all the information and guidance provided by the ME Association for symptoms such as brain fog and post-exertional malaise that are just the same as in ME. But have there been any significant research developments into what’s going wrong in Long Covid? As well as finding some form of effective treatment that doesn’t just help with symptoms?
Treatments: Alzheimer's medication
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
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.
Is ME/CFS an autoimmune disease?
I know that ME and CFS are both classified by the World Health Organisation as a neurological disease. But I’ve also seen statements on the internet to say that ME is now being classified as an autoimmune disease. Is this correct?
Research: DecodeME
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
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
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?
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-mordidities, 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 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).