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.

Search all questions

Choose a letter to see our categories

  • Show all
  • A
  • B
  • C
  • D
  • E
  • F
  • G
  • H
  • I
  • J
  • K
  • L
  • M
  • N
  • O
  • P
  • Q
  • R
  • S
  • T
  • U
  • V
  • W
  • Y
  • 5

Questions in the Category: Cognitive

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.

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!

Treatment: Thiamine

ME Essential Autumn 2021

There are “medical people” on the internet claiming that high doses of a supplement called thiamine are a safe and effective new treatment for ME. What is thiamine? Is there any evidence to support this claim? And could taking high doses of thiamine cause any harm?

New Symptoms

ME Essential Winter 2021

I know that in addition to all the well-known symptoms associated with ME/CFS there are a considerable number of other symptoms that can sometimes occur. But when should I go and see my doctor if I develop a new symptom? Or when an existing symptom isn’t quite the same as it used to be? In my case I’ve always had a problem with balance and I know you have described this as ‘walking on rubber’ – which is exactly how it feels at times! However, I’m now having what are best described as occasional dizzy spells where I feel very “off balance”. I also suspect that my hearing isn’t quite as sharp as it used to be. I’ve mentioned this problem to my new GP, who checked my blood pressure, looked inside my ears and said it was probably caused by ME/CFS – but come back if things don’t improve! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. But at the same time, I don’t want to find that something important, or treatable, is being missed.

Management: Swimming

ME Essential Autumn 2020

Like some people with ME/CFS I’ve made a significant degree of improvement over a number of years. I’m fairly stable, mobile, able go for longish walks, and manage to do some part-time work. A well-intentioned friend who goes wild water swimming has suggested that I ‘give it a try’. She claims it can have all kinds of health benefits, including “resetting body clocks that have gone wrong”. She even pointed me to some research about the benefits of cold water swimming for conditions such as arthritis. I’m very open-minded about trying anything that might work. But I’m concerned that this could actually make ME/CFS worse.

Addison's Disease

ME Essential Summer 2020

I was interested to see the item on Addison’s disease in the Winter issue of ME Essential as I have a close friend with this rare disease and it obviously has some interesting symptom overlaps with ME/CFS. So is there any evidence that adrenal gland failure, and steroid hormone production, could also be involved in ME/CFS? If so, would it be worth looking at steroids as a possible form of treatment for ME/CFS?

Menopause

ME Essential Spring 2020

I’m in my late forties and have had mild to moderate ME/CFS for several years. Over the past few months I’ve been feeling more tired than usual, my concentration has got worse, I often feel hot at night and I have vaginal dryness. Not surprisingly, my doctor has decided that I’m entering the menopause and has recommended HRT – which I’m reluctant to use as I don’t like taking drugs. I’ve also found that what used to be only occasional attacks of migraine have become a much more regular occurrence. Is this unusual? Or can the menopause have an adverse effect on both ME/CFS and migraine-type headaches?

Diet and Nutrition: Malnutrition

ME Essential Summer 2019

I ask because there is a great deal of positive discussion on internet forums about the benefits of unproven special diets, restrictive and exclusion diets, and dietary supplements. At the same time, very little attention is paid to the dangers of cutting out or reducing the intake of specific food groups such as dairy or wheat. And people with more severe ME may have significant problems in obtaining groceries, preparing meals and even eating a full meal. All of which could be having an adverse effect on their overall health. So, do we need to start looking at diet and nutritional status in ME from both a clinical and research point of view?

Blood Flow: Oxygenation

ME Essential Summer 2018

I know there has been some interesting research involving neuroimaging studies and that this has demonstrated defects in blood flow to certain key parts of the brain. But does this research mean that people with ME/CFS have low levels of oxygen entering the brain? If so, does it also explain some of the key brain symptoms – cognitive dysfunction in particular? And could it lead to new forms of drug treatment?

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: 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.

Shopping Basket