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: Fatigue

Symptoms: Post-Exertional Malaise (PEM)

ME Essential Summer 2023

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

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.

Vaccinations: Covid-19

ME Essential Spring 2023

I appreciate that people with ME/CFS can have an exacerbation of symptoms following any type of vaccination, and that a significant minority have had a more severe and persisting adverse reaction to the Covid vaccines. However, I am still keen to continue having this protection so as long as the Covid-19 virus remains in circulation.

My 2022 Autumn Covid Booster resulted in a moderate exacerbation of ME/CFS symptoms – which lasted for about 4 weeks. So I’m querying whether it might be more sensible to allow people with ME/CFS to split the dose in half and have two smaller doses on two separate occasions. I discussed this with my GP but he wasn’t very supportive and has declined to do so. What do you think?

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?

Test: Synacthen

ME Essential Spring 2023

A blood test has shown that I have a low level of the hormone cortisol. As a result I am now being referred to hospital to have a synacthen test to assess my adrenal gland function. As this test involves the use of a drug that stimulates steroid production is it likely to cause any problems for someone with ME/CFS? Or could the use of a steroid be a way of treating ME/CFS?

ME/CFS Specialist Service: Referral

ME Essential Winter 2022

After having a nasty viral infection (probably glandular fever) at the beginning of the year I have been struggling to get an explanation from my GP as to why I haven’t got back to normal health. He has now decided that I probably have post-glandular fever ME/CFS. However, my GP admits that he doesn’t know very much about how to manage ME/CFS. I have asked for a referral to a specialist ME/CFS service but it turns out that we don’t have one. I then asked if I could be referred outside the local area to a service that has good reports from people I have heard from. However, I’m finding it very difficult to get this moving because my GP says I can’t choose where I want to be sent. Please could you explain what my rights are?

Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid

ME Essential Winter 2022

Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!

Non-Alcholic Fatty Liver Disease (NAFLD)

ME Essential Summer 2022

I’ve recently been feeling more fatigued than usual. I’ve also lost a bit of weight and had some tummy pains – which are higher up than the sort of spasmodic pain I sometimes get with my irritable bowel.

My GP did some blood tests – all of which were OK apart from some minor abnormalities in my liver function tests. To cut a long story short I then had a visit to hospital and an ultrasound scan of my liver. It turns out that I have what the hospital doctor calls a fatty liver. He says it’s a fairly common condition – especially if you have diabetes, high blood pressure or are overweight and possibly ME/CFS. Could this be connected to having ME/CFS as well? As I’ve only put on weight since developing the condition.

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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  • 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.
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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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