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: NICE

NHS: In-patient services

ME Essential Summer 2022

We are elderly parents (both in our late sixties) who have been looking after a daughter with moderate to severe ME/CFS for the past 20 years. Like many people severely affected she is not receiving any care from a hospital-based ME/CFS services and she only receives very occasional visits from the GP - who admits that she has no idea about how to manage people with severe ME/CFS. We have, however, been fortunate in obtaining some good social care support. We are becoming increasingly concerned about the overall state of our daughter’s health and having discussed this with the GP who agrees that she requires a thorough medical re-assessment. The problem is that the local ME/CFS service does not carry out domiciliary (home-based) visits and they don't have any in-patient beds for assessment or management of people with severe ME/CFS. The GP is willing to make a referral outside our local area but does not know of anywhere suitable. We would also be willing to pay for a private hospital if we were sure that this would be suitable. Are you able to help?

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?

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.

Employment: Ill-Health Early Retirement

ME Essential Spring 2021

I am facing a big dilemma at work. I’m in my early fifties, have had ME for nearly seven years, and have managed to gradually return to part-time work. I normally enjoy my work but I’ve had real problems trying to obtain some reasonable modifications to the duties I perform. The occupational health department has been supportive but my employer has not been helpful. So I am now really struggling and considering whether I should consider taking early retirement on the grounds of permanent ill health. Is there any guidance you can offer on taking early retirement based on what I assume must be a situation that many other people with ME have to face at some point.

Residential Care Home: Complaints

ME Essential Autumn 2020

I am becoming increasing concerned about the care that a relative with ME/CFS is receiving in a private residential care home. The staff have no understanding about how to care for people with ME and try to push her to do more and more. There have been occasions where I feel that her care has been neglectful or even harmful. I have raised my concerns in meetings with the staff and management on several occasions – who fail to accept that there is a problem. What can I do?

Treatments: Prescribed Drugs and Informed Consent

ME Essential Winter 2020

In addition to ME/CFS I have developed both arthritis and osteoporosis and now require drug treatment for these two conditions. I was recently prescribed a new and fairly powerful drug that soon exacerbated a number of my ME/ CFS symptoms. However, I received no warning that this was something that could happen. As a result, the drug had to be stopped and changed to another one that I was able to tolerate. This upset might have been avoided if my doctor had also considered the potential side-effects a bit more carefully, and discussed them with me, before writing the prescription. Why doesn’t this happen?

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). 

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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