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
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.
Classification : ME/CFS
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?
Long Covid Research
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
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
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?
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).
