Plasma exchange for ME/CFS?

ME Essential Winter 2024

A friend of mine, who has a very debilitating neurological disease, has been receiving a treatment called plasma exchange in a London hospital. This removed harmful antibodies from his blood.

My understanding is that people with ME also have these harmful antibodies. Is this a treatment that we ought to be looking into?

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CRP blood test

ME Essential Winter 2024

I’ve been feeling generally more unwell for several months, so my GP has done some blood tests. They were all reported to be normal – apart from a slightly raised level of one test called a CRP. This is now going to be repeated. What is this test? Is it something that can be raised in ME? And what happens if it remains raised?

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Classification : ME/CFS

ME Essential Autumn 2023

I know that ME and CFS are both classified by the World Health Organisation as a neurological disease. But I’ve also seen statements on the internet to say that ME is now being classified as an autoimmune disease. Is this correct?

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Multiple Sclerosis

ME Essential Summer 2022

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.

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Fibromyalgia: Autoimmunity

ME Essential Autumn 2021

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?

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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?

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Blood Test: Creatine Kinase

ME Essential Autumn 2019

I was interested to read about the new research study from the ME Biobank that looked at the results from all the common blood tests that should be arranged before a diagnosis of ME is made. This study found that people with severe ME often have a reduced blood level of creatine kinase (CK) – something that I also have. But when I asked my doctor to explain why I was told that it was ‘nothing to worry about’. So what is creatine kinase? And why do people with severe ME have a reduced level of CK in their blood?

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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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Blood Test: Antinuclear Antibody (ANA)

ME Essential Winter 2017

I have a new and very thorough GP who has decided to thoroughly re-assess my state of health. So he arranged for a number of blood tests – some of which are not usually used to diagnose ME/CFS but are referred to in the investigation section of the MEA purple book. Everything is normal – apart from me having an ANA positive result with a low antibody titre. What does this mean? Should I be concerned?

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