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: Treatments

Symptoms: Joint Pain and Irritable Bowel

ME Essential Winter 2021

I know that in addition to all the classic diagnostic symptoms of ME there are a considerable number of other symptoms that can sometimes occur. But should we always go and see our GP every time a new symptom appears? Or when an existing symptom changes character or gets significantly worse? In my case, after several years of having ME, I’ve now developed intermittent joint pains (without any swelling or redness) and bowel symptoms (mainly loose motions with occasional stomach cramps and bloating) that sound like irritable bowel syndrome. I haven’t yet mentioned these symptoms to my new GP - who tends to blame everything on ME! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. At the same time, I don’t want to find that a new and treatable medical condition is being missed

Symptom: Palpitations

ME Essential Winter 2021

Like many people with ME I have occasional palpitations. Does this mean that I might have some form of underlying heart disease? Or is this just another part of having ME? And are there any drug treatments that might be helpful?

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.

Dental: Pain

ME Essential Summer 2021

I’m very prone to pain in my teeth. When I mentioned this to my OT she said that she hadn’t heard of that before as an ME symptom but could be connected to the central nervous system. My dentist tends to say that if there was a problem it would be obvious in a particular tooth or it could be tooth grinding especially at night. I don’t feel it is this as I tend to sleep with my mouth open and I don’t wake up with pain usually but it will come on during the day. Symptoms are varied ranging from a general tension and pressure, generalised aching pain in either the top or bottom teeth, or throbbing pain in certain teeth. The deep throbbing does tend to be in “ vulnerable “ teeth ie ones with deep fillings. Sometimes I will get a very bad pain eg back molar on right lower side then the exact same tooth throbs on the other side. Of course I realise I need to discuss this again with my dentist at the next check up. However, I wondered if people with ME are more susceptible to tooth pain generally? Have even wondered if it’s stress? It’s been particularly bad these last few months and I can’t say I’ve been any more stressed than usual!

Dysautonomia: Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (PoTS)

ME Essential Summer 2021

I keep reading about orthostatic intolerance, PoTS and postural hypotension and how they can all be symptoms of ME/CFS. But what do all these medical terms mean? What is going wrong? And are all these symptoms and syndromes related to each other?

Symptom: Vivid Dreams

ME Essential Summer 2021

Are vivid dreams a recognised symptom of ME? Like most people with ME I have unrefreshing sleep and sometimes wake up in the night. But I’ve recently been waking in the middle of the night with very clear memories of rather bizarre vivid dreams. Fortunately, nothing frightening has happened so far!

Polymyalgia

ME Essential Summer 2020

You don’t often cover more elderly people with ME/CFS – so I’d like to pass on a note of warning about a serious health condition that causes ME/CFS-like symptoms. My wife, who is in her early sixties, started to have really quite severe muscle and joint pains and in places – shoulders and hips - where she didn’t normally have pain. We put it down to ME/CFS to start with and so did the GP. But when the pain got worse, and painkillers weren’t working, the GP did some blood tests – one of which showed a high level of inflammation – and she was diagnosed with an inflammatory muscle condition called Polymyalgia. Is polymyalgia more common in people with ME/CFS? And is this something that should be ruled out in elderly people before a diagnosis of ME/CFS is being made?

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?

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.

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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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