Royal College of Physicians article: "Do you really believe in ME?" by Dr Nina Muirhead

Andy

Andy

Retired committee member
With many in the medical profession misunderstanding ME, Dr Nina Muirhead recounts her own experience with the illness and how it reshaped her understanding of it.

Many doctors can find themselves in the position of the patient, and being informed of one’s own diagnosis can be a frightening and emotional experience. Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.

Ten months after developing acute Epstein Barr Virus Glandular Fever I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) by my outstanding and well-informed GP. Prior to becoming ill, I had a vague notion that ME/CFS was an illness related to deconditioning. How wrong I was. The NICE guidelines had perpetuated my misunderstanding of ME/CFS by recommending Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET).
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https://www.rcplondon.ac.uk/news/do-you-really-believe-me
 
Thank you so much, Dr. Nina Muirhead - not many doctors are open about having ME, even less also share their experience. We know the stigma you face, thank you <3

Just like to highlight this part, it's such a strong statement:

Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in.
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MeSci said:
What do you think of this statement:

"The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42."

I had not heard of it being heritable. I wonder whether it was on her grandmother's death certificate.
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It does seem to run in families, as people here will testify, but of course that does not necessarily mean it is inherited. I hope it isn't.
 
Speaking of deconditioning. In the last few months I've experimented and intentionally changed my time spent upright patterns. It seems that avoiding sitting and walking for a week is noticable in some bad ways too. It felt like there was a new feeling of lazy tiredness. Is this the terrible deconditioning I heard about? If so, how can anyone think this could be confused with an illness?
 
MeSci said:
What do you think of this statement:

"The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42."
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There was a recent report from a very large epidemiological study in the US suggesting that there was a significant genetic component, even if we so far cannot identify specific genes for sure.

We all carry risk genes for some chronic illness or other and they get resorted by generation so I am not sure genetic factors are any more worrying than ubiquitous environmental factors that may be harder to shake off! Epstein Barr virus shows no sign of being got rid of for instance.
 
Many, many things have a genetic component - being trampled by elephants has several genes involved that determine the risk.

Genes that determine things like whether or not you're a shark for example ;)

Then there are environmental factors - living in Manchester decreases the risk of being trampled by elephants considerably.

A shark living in Manchester....
 
At least some of the ME/CFS forms are heritable. This is fairly obvious from the many reports of families where more than one person has it. There are even more families where one person has full blown ME/CFS and at least another person has some vague fatigueing illness nobody can diagnose. Presumably that is ME/CFS so mild that it cannot be diagnosed without more accurate tools which we don't have at the moment. Both anecdotal reports and studies have found this.
 
strategist said:
At least some of the ME/CFS forms are heritable. This is fairly obvious from the many reports of families where more than one person has it.
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Actually I don't think it is that obvious. Just because people in the same family have the same condition, does not necessarily mean the medical condition itself has been inherited. It could be that some trait has been inherited, which then causes people to share something common to the way they live, their environment, whatever, that might put them at higher risk. As per @Wonko's example of being trampled by elephants. I don't think there is enough proof either way yet.
 
strategist said:
At least some of the ME/CFS forms are heritable. This is fairly obvious from the many reports of families where more than one person has it. There are even more families where one person has full blown ME/CFS and at least another person has some vague fatiguing illness nobody can diagnose. Presumably that is ME/CFS so mild that it cannot be diagnosed without more accurate tools which we don't have at the moment. Both anecdotal reports and studies have found this.
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It has repeatedly said that many with ME are 'atopic', have allergies and intolerances. I think the figure was about 60%. It applies in my family, husband/son.
 
Nice one. I shared it to local Facebook support group and also to my own small collection of Facebook friends. Some of whom are relatives very old friends and the rest former colleagues and a couple of ME folks I have acquired.

I don’t share much ME stuff generally a handful across the year. It needs to be by a credible person in a credible publication and not too niche or lengthy to make it easy for non-ME person to get their head around. This one is the first one any of my friends has ever shared to their friends. One of my old friends did that and commented about how she’s seen the impact on me. I’m touched.
 
Jonathan Edwards said:
There was a recent report from a very large epidemiological study in the US suggesting that there was a significant genetic component, even if we so far cannot identify specific genes for sure.
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Were you thinking of this one?
Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome
(2016) Maureen Hanson et al, Cornell University
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0771-6

Results
No ME/CFS subject exhibited known disease-causing mtDNA mutations. Extent of heteroplasmy was low in all subjects. Although no association between mtDNA SNPs and ME/CFS vs. healthy status was observed, haplogroups J, U and H as well as eight SNPs in ME/CFS cases were significantly associated with individual symptoms, symptom clusters, or symptom severity.

Conclusions
Analysis of mitochondrial genomes in ME/CFS cases indicates that individuals of a certain haplogroup or carrying specific SNPs are more likely to exhibit certain neurological, inflammatory, and/or gastrointestinal symptoms. No increase in susceptibility to ME/CFS of individuals carrying particular mitochondrial genomes or SNPs was observed.
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According to 23andme I have mitochondrial (maternal) haplogroup H. In the above study this is associated with "feeling dead" after exercise.
 
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CFS_for_19_years said:
Were you thinking of this one?
Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome
(2016) Maureen Hanson et al, Cornell University
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0771-6



According to 23andme I have mitochondrial (maternal) haplogroup H. In the above study this is associated with "feeling dead" after exercise. Just
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Beautiful day' s book explored haplotype gene associations. Interesting stuff ( my aunt is a J)
 
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