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: Fatigue

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

Septicaemia (Sepsis)

ME Essential Autumn 2021

Could you say something about sepsis and ME? A friend of mine who has ME has been seriously ill in hospital with sepsis but is now back home again. The doctors say that she is going to need a prolonged period of recovery from the effects of sepsis. This has also caused a significant relapse of her ME. Are people with ME more at risk from developing sepsis if they just have a minor injury or infection? And is there anything we should be doing to reduce the risk of developing sepsis?

Sjögren’s Syndrome

ME Essential Spring 2021

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?

Functional Limitations: Energy

ME Essential Summer 2020

I have a diagnosis of both ME/CFS and fibromyalgia. For the last couple of months I get a weird thing happening. I can be fine one minute but the next I struggle to keep my eyes open. It’s as though someone has drained all the energy out of my body and I usually end up falling asleep for a few hours. I don’t even have to have done anything but just sitting in my chair. Is this normal for ME/CFS? Or is it something else?

Aetiology: Immune System

ME Essential Summer 2020

I keep seeing references to ‘low level immune system activation’ being an important research finding in ME/CFS. But what does this mean in language that I can understand?

Treatment: Dementia Drugs

ME Essential Autumn 2019

Cognitive dysfunction, involving significant and progressive problems with normal mental functioning, is obviously the main symptom of dementia/Alzheimer’s disease. I understand that there are a growing number of drugs that can be used to treat dementia. Could any of these drugs also be used to treat similar aspects of ME/CFS? And have any clinical trials taken place?

Idiopathic Chronic Fatigue

ME Essential Summer 2019

What is the difference between chronic fatigue and ME/CFS? A friend of mine has been told by her doctor that she has something called idiopathic chronic fatigue. But I know that she has very similar symptoms to ME/CFS.

Diet and Nutrition: The Ketogenic Diet

ME Essential Winter 2019

I have read some internet discussions involving people with ME who claim to be finding benefits from using what is called the ketogenic diet. This is based on the idea that it is beneficial to switch to fats as the primary source of energy. However, I understood that glucose was the best source of ‘food fuel’ that we have. Has any research has been done in this area? And is this safe if you have ME?

Treatments: Drugs – Sensitivities & Side-effects

ME Essential Autumn 2018

This is more of a warning than a question. Earlier this year I experienced a rapid and noticeable deterioration in the fatigue part of my ME/CFS. I was also getting muscle cramps - a new symptom to add to the list. All of this coincided with a prescription from my doctor for water losing tablets (diuretics) to treat high blood pressure. At first, she didn’t think there was any connection. But after doing some blood tests it turned out that I had a low level of potassium - something that can occur as a side-effect of using this type of drug. After a change in medication, my potassium level returned to normal and my ME/CFS symptoms also improved. So it’s worth noting that drugs can sometimes cause a significant exacerbation of symptoms for people with ME/CFS.

Anaemia

ME Essential Summer 2018

A friend of mine with ME/CFS takes a daily iron supplement to help with her fatigue. She says I ought to do the same - even though I know I’m not anaemic. This has been confirmed by a recent GP blood test. So is there any evidence that taking iron tablets could help to boost energy levels in ME/CFS? And is it safe to do so if you are not anaemic?

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.
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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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