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: Severe ME/CFS
Driving
Do you think ME/CFS should be a notifiable medical condition with the DVLA?
Should people with ME/CFS notify the DVLA that they are still driving?
Classification : ME/CFS
I know that ME and CFS are both classified by the World Health Organisation as a neurological disease. But I’ve also seen statements on the internet to say that ME is now being classified as an autoimmune disease. Is this correct?
Treatment: Modafinil
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.
Medical Disclosure
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.
Vaccinations: Covid-19
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?
NHS: In-patient services
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: Vitamin D
Can Vitamin D help people with ME/CFS and are we more susceptible to Vitamin D deficiency?
Functional Limitations: Limb Movement and Use
A friend of mine has had severe ME/CFS for several years and been totally bedbound for the last three. At the beginning of March, within the space of about forty eight hours, she suddenly lost most of the normal functioning and strength of her arms and hands. By turns, depending on which arm had been used the more, first one and then the other hung useless and intermittently painful by her side for a few days. She has since regained some of what she lost but the improvement now seems to have plateaued off. Her fingers remain swollen, she can barely hold a pen to sign her name and needs both hands to operate the switch of her bedside lamp. We surmise that these difficulties may have their origin in inflammation of nerve cells but we are aware that this cannot be proved. We would like to know whether similar problems have been documented in other cases and, if so, whether there is any treatment that has been found helpful.
ME/CFS Prognosis
There is conflicting information about what happens to people with ME. My GP thinks most people get better – although it may take a couple of years! But if you look at internet discussion groups most people believe that while some people will improve nobody ever returns to full normal health. What is the truth?
Investigations: Hand Grip Strength
I was interested to read about the new research from the ME Biobank that looked at hand grip strength in people with ME. As this appears to be a good predictor of both loss of muscle strength and disease severity why isn’t it part of the examination protocol when doctors examine people with ME
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.
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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.