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: Diagnosis
Diagnosis: “Not feeling well”
I have all the characteristic symptoms of ME/CFS – exercise-induced fatigue, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance etc – and my illness followed an acute viral infection. I’ve now been ill for over three years and in addition to all these symptoms I wake up every day just “not feeling well’. I know I’m not alone in feeling this way and wonder why this symptom isn’t ever included in descriptions of this illness.
ME/CFS Specialist Services
The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?
Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid
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!
Multiple Sclerosis
I was given a diagnosis of CFS by my GP (who won't use the term ME) just over a year ago. This was based on symptoms and some blood tests (which were all normal) to rule out other possible causes. I have all the main symptoms of ME/CFS – fatigue, poor memory and concentration, unrefreshing sleep – as well as some of the less common ones. I also have a close friend with multiple sclerosis (MS) and I've been struck by the similarity of some of my other CFS symptoms – tingling feelings and occasional loss of sensation, eye symptoms, being unable to tolerate hot weather – to those of multiple sclerosis. Is this something I should discuss with my GP? I should also point out that my ME/CFS came on very gradually – there was no obvious triggering infection – and that my level of health and disability has fluctuated quite a lot over the past year, often for no obvious explanation.
Employment: Disclosing Medical Information
Having made a significant degree of improvement over the past year I am considering returning to some form of part-time or flexible employment that I can preferably do from home. But I’m apprehensive about disclosing the fact that I have ME to a future employer. Please could you explain what the legal position is here – especially if I am asked about any health problems at an interview.
The 2021 NICE Guideline ME/CFS: Regrets
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?
Alternative Testing: Allergies
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.
Diagnosis: Buspirone Challenge Test
I didn’t think there was a blood test for ME. However, my doctor wants to arrange for me to have what is called a buspirone challenge test. If this test can be used to confirm a diagnosis of ME, why isn’t it being used more widely?
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.
Sjögren’s Syndrome
I know that joint pains sometimes occur in ME/CFS and this is a symptom that I’ve occasionally had over many years – but without any swelling, redness or deformity occurring. But I’ve also developed more persistent joint pain, dry eyes and my fatigue levels are considerably worse. My GP is questioning whether I might now have a condition cause Sjögren’s Syndrome which he says can sometimes be misdiagnosed as ME/CFS. But can it co-exist with ME/CFS?
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.
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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).
