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: NHS

Treatment: Ampligen

ME Essential Summer 2022

I have read a lot of information about the use of a drug called Ampligen on the internet. While it is being given to people with ME in America it does not appear to be available here in the UK My understanding is that Ampligen is being used by a number of doctors who specialise in ME in America and that some people with ME have gained considerable benefit. When I asked my GP about Ampligen he knew nothing about it and did not want to even look at the information I took to the consultation, or investigate further. Even if it means paying privately I would like to give Ampligen a try. I am prepared to accept that it may not work and that it does have side-effects.

The 2021 NICE Guideline ME/CFS: Primary Care

ME Essential Summer 2022

I asked my GP if she was aware of the new NICE guideline on ME/CFS and whether she had read it. The answer was a very firm no and she explained that all doctors are suffering from information overload. So they can’t keep up-to-date with all the new NICE guidelines that appear. Is there any way in which we could actually get our doctors to read this important new information?

Covid-19: Treatments

ME Essential Summer 2022

I'm looking for some guidance on possible treatments for Covid. I care for my partner who is bedbound with severe ME/CFS. He hasn’t been able to get vaccinated due to also having multiple allergies and the possible anaphylaxis risk. Vaccination would therefore have do be done in hospital and he isn't well enough to go to hospital. We are still shielding as a household - although the rest of us are triple-jabbed - to avoid the risk of bringing in Covid and infecting him. However I'm becoming increasingly concerned that this virus isn't going to go away and that it's going to be harder to be able to protect him. So I'd like to have a possible treatment plan agreed in advance with the GP, in case he catches Covid-19. However, the NHS list for those available for antiviral drug treatment doesn't specify ME/CFS. Any thoughts or advice welcomed!

The 2021 NICE Guideline ME/CFS: Drug Treatments

ME Essential Autumn 2021

Comparing some of the recommendations on the use of specific drugs in the new NICE guideline to those in the previous 2007 NICE guideline, I see that melatonin is no longer given a possible recommendation for sleep disturbance in the 2021 guideline and the “do not use” instruction in the 2007 guideline no longer applies to antiviral drugs, fludrocortisone, steroids and thyroxine. Does this mean that doctors can no longer prescribe melatonin but that they can now prescribe amphetamines, antiviral drugs, steroids, etc for people with ME?

The 2021 NICE Guideline ME/CFS: Regrets

ME Essential Autumn 2021

I know you feel that the new NICE guideline is a major improvement on the first one. So do I. But do you have any concerns, disappointments or disagreements on the content?

The 2021 NICE Guideline ME/CFS: Scotland, Wales and Northern Ireland

ME Essential Autumn 2021

I know that the recommendations in the new NICE guideline apply to England. But what is the situation in Scotland, Wales and Northern Ireland where GPs often lack the necessary skills to diagnose and manage people with ME and hospital-based referral services are either poor or non-existent.

Alternative Testing: Allergies

ME Essential Autumn 2021

I am currently seeing a chiropractor who has been quite helpful with my joint pain. The chiropractor is also recommending something called kinesiology testing - which is supposed to identify allergies - for my ME. I have always been rather suspicious of commercial allergy testing. Please could you explain what kinesiology is and whether it is worth spending money on.

Prevalance: Population Estimates

ME Essential Spring 2021

The MEA always uses a figure of around 250,000 when you refer to the number of people in the UK who have ME/CFS. But where does that figure come from? And how accurate is it?

Symptom: Sore Throat

ME Essential Spring 2021

Like many people with ME I have more than my fair share of sore throats - sometimes accompanied by enlarged neck glands. I’ve read the MEA guidance on the self-help management of sore throats and I know that there’s usually no point in going to the doctor to ask for antibiotics. But having had a really nasty attack this winter, which did result in my GP prescribing a course of antibiotics, it would be helpful if you could clarify when we do need to consult a doctor.

Medical Records

ME Essential Spring 2020

I am currently in dispute with my GP - who is refusing to correct some inaccurate medical information that was written in my medical notes. The GP maintains that this reflects a difference of opinion over what was said at a previous consultation. However, I believe the information about what I am capable of doing, both physically and mentally, is inaccurate and could have an adverse effect when it comes to him providing information to the DWP on my benefit claim for personal independence payment. What can I do to get this corrected?

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. 
  • Contact us via email or social media: Facebook, Instagram, Twitter, LinkedIn

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: contact@meassociation.org.uk

MEDICAL DISCLAIMER

Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.

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