Archives: Medical Matters

Treatment: Vitamin D

Can Vitamin D help people with ME/CFS and are we more susceptible to Vitamin D deficiency?

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.

Treatment: Coenzyme Q10

My nutritionist has advised me to start taking a supplement called coenzyme Q10 (CoQ10) which, she says, will boost my energy levels and improve my memory problems. What is CoQ10 and is this claim justified? Are there any side-effects? Can I take it with prescription-only medicines?

Vaccines: Shingles

As I’m 70 I’ve been offered the shingles vaccine. I have had ME since 2016, consider myself to be severe, and already suffer from nerve pain. So I do not want to make things worse. But I’m also aware of people with ME who have had a significant exacerbation of symptoms following a vaccination. So should I have this vaccine?

Viral Infections: Reactivated

I’ve been reading some interesting new research which indicates that reactivation of viruses that lay dormant in the body after the initial infection could be a cause of Long Covid. The reasoning seems to be that Covid infection activates the body’s immune system and this results in the reactivation of viruses that have been lying dormant and harmless in the body but now become active again and are capable of causing symptoms. Given the overlaps between Long Covid and ME could this be happening here as well? And has any research been done into this in ME?

Symptoms: Joint Pain and Irritable Bowel

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

Management: Fitness

Can I ask what the advice is on heart health for people with ME? As most of us can’t exercise, how do we maintain a healthy cardiovascular system? Is a healthy diet enough?

Symptom: Palpitations

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?

Vaccines: Covid-19

Long Covid seems to have a lot of symptoms in common with ME/CFS and I know that the MEA has been pointing this out since it soon became apparent that some people were not returning to normal health after catching Covid-19.

One of the important differences between Long Covid and ME/CFS appears to be how people with both conditions react to vaccinations. Those with ME/CFS often report an exacerbation of ME/CFS symptoms and this can sometimes be quite severe and persistent. But there are now numerous reports about people with Long Covid feeling a lot better after having a Covid-19 vaccination and in some cases even recovering from Long Covid. Do we know why this is occurring? And could it have any implications for ME/CFS?

The 2021 NICE Guideline ME/CFS: Drug Treatments

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

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

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.

Septicaemia (Sepsis)

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?

Fibromyalgia: Autoimmunity

There was an interesting report in The Guardian newspaper about some new research into fibromyalgia. This suggests that there is an immunological abnormality involving antibody production and that removing these harmful antibodies could be an effective form of treatment. This is a brief summary of what they found: The researchers in London took blood from 44 people with fibromyalgia and injected purified antibodies from each of them into different mice. The mice rapidly became more sensitive to pressure and cold, and displayed reduced grip strength in their paws. Animals injected with antibodies from healthy people were unaffected. Prof Camilla Svensson from the Karolinska Institute in Sweden, who was also involved in the study, said: “Antibodies from people with fibromyalgia living in two different countries, the UK and Sweden, gave similar results, which adds enormous strength to our findings.” The mice recovered once the antibodies had been cleared from their systems, which took a few weeks. This suggests that therapies such as plasma-exchange, which are designed to reduce antibody levels and are available for other autoimmune disorders, such as myasthenia gravis, may be effective in fibromyalgia patients. Given the important overlaps between ME and fibromyalgia, do you think this research is worth repeating in ME?

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.

Genetic Predisposition: Hereditary

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?

Aetiology: Causation

 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?

Treatment: Thiamine

There are “medical people” on the internet claiming that high doses of a supplement called thiamine are a safe and effective new treatment for ME. What is thiamine? Is there any evidence to support this claim? And could taking high doses of thiamine cause any harm?

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?

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