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: Chronic Fatigue Syndrome

Vaccinations: Flu (Influenza) 2023-24

ME Essential Autumn 2023

Can you help me reach an informed decision about the 2023-24 Flu vaccination?

Vaccinations: Autumn Covid Booster 2023

ME Essential Autumn 2023

Can you help me reach an informed decision about the 2023 Autumn Covid Booster vaccination?

Symptoms: Post-Exertional Malaise (PEM)

ME Essential Summer 2023

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

Gilbert's Syndrome

ME Essential Summer 2023

A few months ago I noticed that the whites of my eyes had turned slightly yellow. It turned out that I had a mild episode of jaundice. My GP was a bit mystified – so I was sent to see a liver specialist who diagnosed a condition called Gilbert’s Syndrome. The specialist said it was nothing to worry about. However, as he had seen other people with ME/CFS with the same condition, he wondered whether there may be a link. Is this so?

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?

 

Research: Post-Mortem

ME Essential Summer 2023

What is happening to post-mortem tissue research into ME/CFS at the moment? Is the ME Association still funding and carrying out any postmortem research? And have any significant abnormalities been found in the post-mortems that have been carried out so far?

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.

Hypermobility & Ehlers Danlos Syndrome

ME Essential Spring 2023

My daughter, who is now in her early twenties, has had ME/CFS since being a teenager. We have always felt that her joints are more flexible than normal. She often has strains and sprains and has dislocated her knee in the past. Her doctor is now querying whether she may now have a hypermobile joint condition called Ehlers Danlos Syndrome. Are there any links between hypermobile joints and ME/CFS? Or is this just a coincidence?

Medical Disclosure

ME Essential Spring 2023

I have quite severe ME/CFS and am currently unable to work. However, my wife has a well-paid job and we are probably going to have to move house to another part of the country later in the year. As this may involve taking out some new insurance cover can I check what the position is regarding the disclosure of my medical information to an insurance company? Whilst I can understand why an insurance company would find it helpful to know about someone’s state of health, I am concerned about the accuracy of the information that my GP may be asked to provide – as he takes a rather sceptical view of ME/CFS and I very rarely see him.

Symptoms: Pins and Needles

ME Essential Spring 2023

I’m in my early forties and have had moderate ME/CFS for about 5 years. I have all the usual symptoms but I now have a new and rather distressing sensation in my arms and sometimes in my legs. It is very similar to the ‘pins and needles’ sensation you can get when your legs have been crossed for too long. These abnormal sensations come and go and don’t seem to be triggered by anything in particular. Is this yet another symptom of ME/CFS? Or do I need to go and see my doctor?

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.

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