Growing old with ME

ME Essential Autumn 2024

I am now in my late 60s and have had ME for almost 30 years. I have never been severely affected and have always managed to remain reasonably mobile and my cognitive function hasn’t been too badly affected. Over the past year I’ve noticed that I am definitely slowing down both physically and mentally in relation to memory and concentration.  I still feel fed up and frustrated at times but not to the point of being depressed.

So is this just a natural part of growing old with ME? Or do I need to see my doctor? And has any research been carried out into old age and ME?

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Genetic Predisposition: Hereditary

ME Essential Autumn 2021

I am the only person in my family to have ME that I know of. But I’ve heard that people with ME quite often have another family member with the disease. Is this true? If so, can someone with ME transmit it to their children? And has any research been carried out into the genetics of ME?

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Aetiology: Causation

ME Essential Autumn 2021

Most people I know with ME say their illness started with or followed an infection – from which they never recovered. But there are a few who don’t recall a clear and sudden onset to their deterioration in health. So are we really sure that infections are always the cause of ME?

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Functional Limitations: Limb Movement and Use

ME Essential Summer 2021

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.

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Rheumatoid Arthritis

ME Essential Winter 2020

I’ve always had occasional joint pains since developing ME/CFS three years ago but they are definitely getting more frequent and painful. As both my mum and aunt have rheumatoid arthritis, I’m worried that I may also be developing arthritis. My GP isn’t too concerned as there isn’t any swelling or signs of inflammation, but I’m still not happy. What is the difference between joint pains in ME/CFS and true arthritic joint pain?

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Treatment: Cyclosphosphamide

ME Essential Spring 2018

I was very disappointed to see that the big clinical trial of Rituximab being carried out in Norway had failed to show any benefit – so it looks as though it may be the end of road for this particular drug. But I noticed in the ME Association statement on the trial results that the Norwegian doctors are carrying out another clinical trial to assess the safety and benefits of a drug called cyclophosphamide. I know someone with arthritis who takes this drug and finds it very useful. But why could it be of use in ME/CFS? And am I right in thinking that it can also has some very unpleasant side-effects?

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Treatment: Tumeric & Circumin

ME Essential Summer 2017

There is little evidence to indicate that herbal and Plant remedies are of any value in treating ME/CFS, or symptoms, and can sometimes cause harm. But there are some interesting reports on the internet forums from people who say that they have been helped by taking turmeric. And I believe that there is also some interesting research evidence to show that it can help to reduce inflammation — which could be of benefit in ME/CFS. Do you have any views on this?

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Symptoms: Swollen Hands and Feet

ME Essential Summer 2017

Can swollen and puffy feet, and occasionally puffy hands, be part of having ME/CFS? And if so what can I do to reduce the swelling?

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Symptoms: Joint pain

ME Essential Spring 2017

I've always had occasional joint pains since developing ME/CFS — as there's a history of rheumatoid arthritis (RA) in my family. I've had a blood test for RA in the past but it was negative for RA.

My joint pains have recently changed with redness and a slight swelling in some of the small joints in my hand as well as pain in the feet. The pain and stiffness is worse in the morning and diminishes as the day goes on. Is this type of joint pain consistent with ME/CFS? Or should I go back to my G

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Symptoms: Jaw pain in ME/CFS

ME Essential Winter 2017

I’ve been having pain in and around my jaw for several months. My GP can’t find anything wrong but I’ve read that there is a condition called temperomandibular joint disorder which causes jaw pain and is said to be more common in ME. Is this true? And what can I do when I have a GP who doesn’t seem to know anything about how to diagnose or treat this condition?

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