Salon - Why conditions like chronic fatigue syndrome and long COVID are still so mysterious

[Kalliope]

Good article where Chris Ponting and Charles Shepherd have been consulted:

Quotes:

“The name chronic fatigue syndrome does not reflect people's symptoms as chronic fatigue is not the main feature of this disease, and for anyone to think that it is would diminish people's experiences,” Chris Ponting, a professor at the University of Edinburgh to co-lead of the DecodeME study, which is the largest ME/CFS study in the world, told Salon. “It’s also female dominant, there are five times more people within ME who are female than are male, also more people are more likely to have ME if they're older.”

...

Shepherd has been able to find relief through “pacing,” which is energy and activity management. Currently, treatment usually also includes cognitive behavioral therapy to manage peoples’ symptoms. Graded exercise therapy, Ponting said, used to be recommended as part of the UK’s guidance, but isn’t anymore. The therapy included increasing a person’s level of activity, but it proved to be too harmful to people.

Through Ponting’s study, potential breakthroughs could be on the horizon.

“We'll show or shine a light down onto what exactly should be studied next,” Ponting said. “But what we're not going to do, unfortunately, is discover a drug that will help people manage their disease over the next few years.”

https://www.salon.com/2024/12/08/wh...ue-syndrome-and-long-are-still-so-mysterious/

 

[Hutan]

“The name chronic fatigue syndrome does not reflect people's symptoms as chronic fatigue is not the main feature of this disease, and for anyone to think that it is would diminish people's experiences,” Chris Ponting, a professor at the University of Edinburgh to co-lead of the DecodeME study, which is the largest ME/CFS study in the world, told Salon. “It’s also female dominant, there are five times more people within ME who are female than are male, also more people are more likely to have ME if they're older.”

That means, Ponting elaborated, that the typical ME/CFS patient is an older woman.

I'm very grateful for Chris's work.

But, I'm surprised that Chris is still reporting that extreme female predominance. That's saying 82.5% of people with ME/CFS are female. The body of evidence really doesn't support that. Also surprised that he's using the term 'ME'. And 'people being more likely to have ME if they are older' is just a natural consequence of a lot of people not ever recovering. I think the combined picture created is of ME/CFS being a disease of old women that perhaps doesn't matter much economically, when it's actually hitting a lot of young people and people of working age who eventually become old people with ME/CFS.

I don't think highlighting that the typical ME/CFS patient is an older woman is going to get the research funds pouring in.

 

[Hutan]

In modern-day culture, it’s common to complain about being tired. But for some people, being extremely tired is just one symptom of a disease that’s increased in awareness since the COVID-19 pandemic that can severely impact everyday activities: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Symptoms can include extreme fatigue, but also trouble thinking, severe tiredness and an inability to do activities, like shower or cook themselves a meal.

I found the article a bit muddled. It talks about tiredness not being the only symptom and how 'chronic fatigue syndrome' isn't a good name, while liberally suggesting that the disease is about being tired and using 'chronic fatigue syndrome' throughout. CFS is even in the title. And ME/CFS and ME are all used, without clarification. In that second quote, symptoms include both extreme fatigue and severe tiredness.

“Policymakers in this world are more often going to be younger males who have very little risk for this disease, and are perhaps completely unaware of the devastation that it has wrought across our population and still does through its sort of sister disease, long COVID,” Ponting said.

Again, more on painting ME/CFS as an older female disease. Young men are directly at risk from the disease, and so are their families. If a young man's wife gets ME/CFS when they have young children, the young man will be part of the devastation. I'm also not keen on the idea that it's mostly young men calling the shots on policy - I don't think that is really true.

Mostly, I ask Chris and others to reconsider the idea of highlighting that the typical ME/CFS patient is an older woman. I don't think that's going to have the research funds rolling in or make politicians and health policy makers leap into action.

 

[Jonathan Edwards]

My impression is that the journalist didn't really have much idea of what she was being told, tried to repeat it but got a lot of it a bit muddled.

I don't get the need to talk about female predominance. Breast cancer and rheumatoid are female predominant. It never stopped them being researched and treated. Women are in general much nicer patients to look after so I don't really see what the bias stuff is supposed to be about.