Robert 1973
Senior Member (Voting Rights)
@Veronica I thought this might be of interest if you've not already seen it.
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Fact sheet drafting HERE! Fact sheet #4 - Management of severe and very severe ME/CFS - comments by 21st April please
A Life Hidden - Blog posts by Naomi Whittingham
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Naomi10
Established Member (Voting Rights)
Thank you everyone. I always greatly appreciate all your comments.A new blog post from Naomi Whittingham this week. Beautifully written as always and ends with an impressive poem. She's such a good writer!
On Gratitude and Grief
Through many years living with severe illness, I’ve come to know a lot about emotions. From the sorrow and regret of a life lived so differently to anything that might have been chosen; to the beams of happiness found in unexpected places. From the pain of feeling forgotten by the world; to the relief when someone listens.
Feelings are heightened when isolation and lack of distraction are a standard part of existence. Grief sits heavily indeed when it must be stared full in the face, day after day. But joy, conversely, soars high in a life stripped bare. How intense is the beauty of the sky or a spring flower when days are bleak.
On Gratitude and Grief
Through many years living with severe illness, I’ve come to know a lot about emotions. From the sorrow and regret of a life lived so differently to anything that might have been chosen; to th…alifehidden.com
Naomi10
Established Member (Voting Rights)
I’m not sure where to post this query, so am putting it here as a start.
Can anyone point me to a quality resource giving a summary of research findings in ME? I’ve realised that the pages I linked to on this page are now out of date and it would be good to update them.
I’m also interested in something I could link to about damaging exercise treatments.
Many thanks!
https://alifehidden.com/what-is-me/
Can anyone point me to a quality resource giving a summary of research findings in ME? I’ve realised that the pages I linked to on this page are now out of date and it would be good to update them.
I’m also interested in something I could link to about damaging exercise treatments.
Many thanks!
https://alifehidden.com/what-is-me/
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Hi @Naomi10. Lovely to hear from you. The short answer is there are no confirmed research results that point us definitely towards any specific causes and no proven effective treatments.
This sentence from a recent Science for ME fact sheet written by Prof Jonathan Edwards pretty much sums up the current situation and refers to the DecodeME genetic study:
Fact sheet 3: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome): Information for Medical Professionals
This sentence from a recent Science for ME fact sheet written by Prof Jonathan Edwards pretty much sums up the current situation and refers to the DecodeME genetic study:
Fact sheet 3: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome): Information for Medical Professionals
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Naomi10
Established Member (Voting Rights)
Thank you @Trish I’ve just been reading some of the discussion on here around “bio babble” and spreading of misinformation.
It’s quite a lot to take in, but I’m interested as to whether this paragraph on my site would be deemed incorrect. When I wrote it (in 2018) it was based on resources I considered to be reliable:
“ME has been recognised by the World Health Organisation as a neurological condition since 1969, with thousands of research studies demonstrating abnormalities in the nervous, immune, circulatory and musculoskeletal systems, as well as in the cellular mitochondria.”
I think technically it's probably not wrong, but its implication is. There are probably hundreds if not thousands of papers claiming to have found differences between ME/CFS participants and control groups. I guess it's a matter of whether 'claiming to have found differences' is the same thing as 'demonstrating abnormalities'.
The problem is that these findings are rarely replicated and even less likely to be replicated by an independent group. And typically it's easy to make an argument that the identified difference is probably the result of lifestyle factors such as low levels of activity. There are often all sorts of other flaws too, such as poor selection of the ME/CFS group and poor matching of the control group.
Jonathan Edwards
Senior Member (Voting Rights)
I appreciate your desire to inform and get this right @Naomi10.
There are two problems that I see there.
It is very unclear to me whether the WHO thought they were dealing with 'ME' as described by Acheson or ME/CFS as we know understand it. They are completely different concepts. Acheson thought he was describing an epidemic viral illness with focal neurological signs, as reported at the Royal Free Hospital in 1955. We no longer think that is a useful concept. Nobody is quite sure what those neurological signs meant and they were in relation to an acute illness, not a chronic one.
ME/CFS as we now understand it certainly impacts on the nervous system but whether it is useful to call it a neurological disease or not I am not sure. It is chronic and does not have focal neurological signs.
I think we should stop referring to that WHO decision because it perpetuates the confusion between Acheson's 'ME' and ME/CFS. WHO committees aren't necessarily right, anyway.
I agree with Hutan but think it is probably incorrect to say that abnormalities have been demonstrated. People have claimed to find differences between people with ME/CF and controls. However, for the great majority (98% at least) of those claims I think we can be reasonably sure that they do not tell us anything useful about the mechanism of ME/CFS. Moreover, in almost all these studies what are shown are not abnormalities. They are shifts in values for results towards one or other end of a scale but still normal values. That means that even if they have something to do with a mechanism they are not actually the direct cause of disease, at best an indirect clue.
There are two problems that I see there.
It is very unclear to me whether the WHO thought they were dealing with 'ME' as described by Acheson or ME/CFS as we know understand it. They are completely different concepts. Acheson thought he was describing an epidemic viral illness with focal neurological signs, as reported at the Royal Free Hospital in 1955. We no longer think that is a useful concept. Nobody is quite sure what those neurological signs meant and they were in relation to an acute illness, not a chronic one.
ME/CFS as we now understand it certainly impacts on the nervous system but whether it is useful to call it a neurological disease or not I am not sure. It is chronic and does not have focal neurological signs.
I think we should stop referring to that WHO decision because it perpetuates the confusion between Acheson's 'ME' and ME/CFS. WHO committees aren't necessarily right, anyway.
I agree with Hutan but think it is probably incorrect to say that abnormalities have been demonstrated. People have claimed to find differences between people with ME/CF and controls. However, for the great majority (98% at least) of those claims I think we can be reasonably sure that they do not tell us anything useful about the mechanism of ME/CFS. Moreover, in almost all these studies what are shown are not abnormalities. They are shifts in values for results towards one or other end of a scale but still normal values. That means that even if they have something to do with a mechanism they are not actually the direct cause of disease, at best an indirect clue.
Jonathan Edwards
Senior Member (Voting Rights)
On the positive side, we do have some useful information from epidemiology and from genetics. The genetics show links to specific DNA regions, indicating that 'ME/CFS' does pick out a biological process common to about 0.5% of the population. The link is the same for women and men so it looks as if there is similar process affecting both sexes despite the sex ratio being around 3:1.
I think it is also relevant that for pretty much all systems of the body that have been studied it is likely that there is no structural disease like inflammation or mitochondrial failure. That points us to other directions - maybe nervous system in fact - where problems can occur without being so obvious.
I think it is also relevant that for pretty much all systems of the body that have been studied it is likely that there is no structural disease like inflammation or mitochondrial failure. That points us to other directions - maybe nervous system in fact - where problems can occur without being so obvious.
Naomi10
Established Member (Voting Rights)
Thank you @Hutan and @Jonathan Edwards - I very much appreciate your input. Would this be more accurate as an opening paragraph?
"ME (myalgic encephalomyelitis, also known as ME/CFS) is a serious, chronic illness, often - though not always - triggered by a viral infection. Around 400,000 people in the UK and millions worldwide are thought to be affected. Research has been greatly underfunded and little is known about the mechanisms involved in the illness. However, the DecodeME study, published in 2025, demonstrated significant differences in the DNA of those with ME, in genes relating to the immune and nervous systems. (Details of other recent research undertaken by UK ME charities can be found here, here and here.)"
"ME (myalgic encephalomyelitis, also known as ME/CFS) is a serious, chronic illness, often - though not always - triggered by a viral infection. Around 400,000 people in the UK and millions worldwide are thought to be affected. Research has been greatly underfunded and little is known about the mechanisms involved in the illness. However, the DecodeME study, published in 2025, demonstrated significant differences in the DNA of those with ME, in genes relating to the immune and nervous systems. (Details of other recent research undertaken by UK ME charities can be found here, here and here.)"
Jonathan Edwards
Senior Member (Voting Rights)
That looks splendid.
I wrote the following last night, not sure whether to post it. It's not answering Naomi's question, but it is some of the reasons why a claimed biological abnormality may not in fact be a difference attributable to ME/CFS and why replication is so important.
A lot of these so called differences are differences in the mean values for the ME/CFS and control groups. Usually there is a statistic indicating the difference is statistically valid, but sometimes there isn't even that.
Regardless, typically when you look at the scatter plot of the values, the range of values for each group overlaps a lot, and often almost all of them are within normal ranges. Yes, it is possible that there are some people in the ME/CFS group who don't have ME/CFS, so their results could be expected to look like the controls. But, if the biomarker was really interesting, then we could expect to see at least some of the values for the ME/CFS group clustered together, looking unusual, rather than there being substantial numbers of ME/CFS data points both above and below the mean control value.
Sometimes the numbers of participants are so small that it's not at all surprising that a difference is found between the groups, just by chance. (Think of tossing a coin. If you only toss it five times, getting 5 heads isn't so unusual, whereas if you keep tossing it for 100 times, it's likely there will be close to 50% heads..) Sometimes the number of features (metabolites, proteins) examined is so large, thousands, that it isn't surprising that a few differences are found, just by chance. (Think of tossing 1000 coins, each 5 times. The chances of one of the coins getting 5 heads is very high.)
Sometimes the difference is real, but the reason it is there is because the controls aren't matched - maybe the ME/CFS group is older than the control group, or the percentage of women is markedly different, or the medicines the groups are taking are different.
And then there is technical error, which I think is probably happening a lot more than we want to think about and can be very hard to identify. If the ME/CFS samples tend to be collected at a different time of day compared to the controls, that might make a difference. Or if the samples of one group were stored longer, or if all the control samples were analysed in the morning when the machine was working differently to how it operated in the afternoon.
I think it is good, but I'm a bit worried that the DecodeME sentence might give the false idea that DecodeME identified significant differences that every person with ME/CFS has. "However the DecodeME study... demonstrated significant difference in the DNA of those with ME". Actually, I think there were probably lots of participants in DecodeME that had none of the variants in the 8 identified genomic regions.
We've seen some good words describing what can actually be said - maybe in a Fact Sheet?
Maybe "demonstrated that there are gene variants that make ME/CFS more likely, with the identified pattern of gene variants suggesting that ME/CFS is a unique condition affecting the immune and nervous systems'?
I would say this is still a little inaccurate. DecodeME didn't find differences in genes, they found differences in genetic variants. As far as I can tell, the mapping of these variants to immune or nervous system genes is still very speculative. The other two main findings are the MAGMA analysis which found significant enrichment of genes expressed in the brain, and the shared variant with multisite chronic pain.
If I was writing it, I'd probably make it more like one of these:
Edit: Maybe slightly altered wording about "significant differences" as well, like Hutan suggested, if there's a concern that it'll be interpreted as everyone with ME/CFS having the variants.
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