Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

Also other biomedical neurological conditions can have associated depression, that is a symptom of the neurological condition is depression or it causes a subjective experience that is misinterpreted as depression. So it is theoretically possible that a neurological consequence of ME or an ME subgroup is subjectively experienced as depression.

Earlier in my ME I used to experience a sudden drop in mood as an aura for my PEM associated migraines. Over time I learned to see this as a PEM warning rather than depression and now I can’t say whether it has stopped happening or if I have learned not to experience it as a psycho emotional event.

 

When I had young children I was often exhausted in a way I do not experience anymore as I can rest long before it reaches that stage.

One curious effect was I would find tears running down my face in what I believe was their excretory function as there was no emotion associated with it at all.

The other things was a sudden deep, the world is black and hopeless depression which lifted completely with 5 minutes sleep (Thank you Play School!)

Nowadays I get a depression after I have been running on adrenalin which I believe is a rebound effect. It usually does not last as long as a day and I thole it like the increased pain of bad PEM.

None of these things have been like depression the disease.

 

I also do get that sudden drop in mood when I'm in PEM. It is like a switch that gets turned on quickly when my symptoms worsen and gets turned off the same way the moment my symptoms start to ease a bit. It is very clear to me that it has nothing to do with my actual mood or personality and this is actually how I can cope with it and ignore it: I know it is not me, that area of my brain is somehow probably affected by some process and that it will be gone like it never happened once I'm out of the crash.

Some covid long haulers in my group also mentioned such experiences.

And @Peter Trewhitt is right about this: this is actually true for some neurological diseases. There was someone with Parkinson's in my family who randomly started to cry without any reason or buildup: it wasn't really him doing it but his brain was affected by the disease somehow. Same for Selma Blair with MS: she used to be woken up at night by her own laughter and later she had outbursts of crying because of the damage to her brain.

Of course I don't know if this is the reason here but such things happen. It actually has a name: pseudobulbar effect.

 

I can experience a drop in mood during PEM. It lasts only a day or two and gets better with rest.

 

Need to be careful with half-baked diagnoses of depression by GPs. Mood swings that occur from hour to hour or day to day have nothing to do with clinical depression.

 

I've just seen the first review, from Prof. Sarah Tyson, has been posted, and is a 'Not Approved'. There are some good points in there that I agree with, and some stuff I don't.

 

One of Sarah's main criticisms is on the purpose of the paper: What exactly is the take home message? What are the main results? I agree with her that this needs work. The paper is essentially an initial overview of the questionnaire respones and some 'association fishing', but people want clear results and conclusions (and not too many). I think the paper is perhaps trying to do too much at once; for example, the novel aspect of the work is typing by infection at onset. This could be a paper on its own, giving all the details that Sarah believes should be included in the current manuscript. Instead, this analysis is lost in a sea of other results.

 

With the change of eligibility today, I’d be hopeful that most if not all of the 20,000 non-Covid samples will be obtained.

But any unused government-funding would be disappointing so I put this out:

 

Revised version is available, following peer reviewers comments, https://openresearch.nihr.ac.uk/articles/3-20/v2

"Amendments from Version 1
The revised manuscript has benefited greatly from the reviewers’ constructive suggestions.

In response, the study’s main aim has been made explicit in the Abstract; the plain English summary has been rewritten; the DecodeME questionnaire is described in greater detail; a Methods paragraph has been completely rewritten to state the questions asked explicitly and to connect these to the logistic regression models used; comparisons of results to the existing literature are made in the Discussion section rather than in the Results; numbers and percentages of participants are shown together, and median and interquartile range values for ages are given; the principal finding of each Results section is stated in its heading, to improve comprehension; the opening paragraph of the Discussion has been rewritten to summarise the study’s main findings; a fourth limitation of the study (on collinearity) has been included; text that was duplicated in error was removed; and, we clarify that the DecodeME questionnaire is not intended to be used as a clinical tool. In two places, results were revised due to previous errors (detailed in our response to Reviewers).

Results previously shown in Figure 3 are now discussed first, so this now becomes Figure 1; previous Figures 1 and 2 are now Figures 2 and 3. Acknowledgements have been updated. Results shown in the Figures, and the authorship list remain unchanged.

Extended Data has now been made available from the Open Science Framework website: https://osf.io/rgqs3/. This Project site contains CC-BY license DecodeME Study Documents: (i) the DecodeME Questionnaire (version 6) annotated by question identifier (Qid) which were used in the logistic regression analyses detailed in (ii) the regressionResults.txt file."

 

Women with ME tend to have more symptoms than men, study suggests

"Women with chronic fatigue syndrome (CFS) tend to have more symptoms than men and are more likely to develop increasingly severe symptoms over time, according to initial results from a major study.

It is already known that women are at higher risk of CFS, also known as myalgic encephalomyelitis (ME), and the latest study, called DecodeME, provides new insights into how their experience differs from men. The study found that women who have ME/CFS for more than 10 years are more likely to experience increasingly severe symptoms as they age.

Study lead Prof Chris Ponting, from the University of Edinburgh’s Institute of Genetics and Cancer, said: “ME/CFS is a devastating disease affecting a UK population the size of Derby. We discovered that the disease is worse for women, in older people, and many years after their ME/CFS started.”"

https://www.theguardian.com/society...to-have-more-symptoms-than-men-study-suggests

 

This post and several others referring to a request from Sky news for female interviewees with ME/CFS have been moved here and the request thread deleted as no longer needed.

It seems likely that it was connected that this request from Sky was connected to the results from our initial analysis of DecodeME questionnaire responses.

Chris and Sonya have already recorded interviews with Sky News about this; I can't answer why Sky seemed to want to speak to pwME about why more women than men are diagnosed with ME/CFS - the obvious answer would seem to be that more women than men are affected by it.

 

Sky News

Women 'suffer more from ME', according to largest ever study into the disease

"Not only are women far more likely to suffer from ME, but they're also more likely to have more symptoms, and co-occurring conditions that are more severe, according to early results of the largest-ever study into the disease.

The DecodeME study has so far recruited more than 17,000 people in the UK with a diagnosis of ME or myalgic encephalomyelitis - sometimes called chronic fatigue syndrome.

The researchers aim to study 20,000 DNA samples from this growing group to learn whether ME is partly genetic. Not only could it point to treatments but may also help de-mystify a neglected, and often maligned disease.

"For a long time, people didn't even truly believe that this illness existed," says study lead Professor Chris Ponting, from the University of Edinburgh."

https://news.sky.com/story/women-su...-largest-ever-study-into-the-disease-12946224

 

https://news.sky.com/story/amp/wome...-largest-ever-study-into-the-disease-12946224

Sky produced this instead. Reads a better than the Guardian article.

 

DecodeME social media post.

"We've published our initial findings from the questionnaire data from the first 17k participants.

Read our summary blog:https://shorturl.at/wBOQ3

Or read the full article: https://shorturl.at/istzT

You can still sign up to #DecodeME: https://rb.gy/0lxxx"

Facebook: https://www.facebook.com/decodeMEst...9T4neKB4rgrz7UuHzC4kwGaUq1sYB9ncRhyWRQHfTdGZl

and will be on Instagram somewhere.

 

Also in the Independent, https://www.independent.co.uk/news/...-for-health-and-care-excellence-b2398305.html

 

Although the planned discussion on Gender Bias did not take place today, Sky News Breakfast did show Sky’s Science and Technology reporter Tom Clarke’s piece on DecodeME. (At approx 08:50?)

Unfortunately it was somewhat spoilt by the large banners across the screen labelling the condition as “Chronic Fatigue”.

I felt compelled to tweet!

https://twitter.com/user/status/1694623690661531925

 

Thank you especially to Chris Ponting for doing these interviews. Something on Radio Scotland too I think.