Some decades back, 1990 “Scientists Identify virus causing fatigue in ME“

[SWAlexander]

 

[Treeman]

Nice to see a piece of historical information. Shame it's 2023 and the same things are suspected. Why did this research not progress?

 

[BrightCandle]

Nice to see a piece of historical information. Shame it's 2023 and the same things are suspected. Why did this research not progress?

No research money. Not one public instutition in the world has put up consistent cash to actually research the causes of the disease and chase down the theories or to run trials on any drugs.

 

[SWAlexander]

How about one from 2009.

Virus Linked to Chronic Fatigue Syndrome
https://www.nih.gov/news-events/nih-research-matters/virus-linked-chronic-fatigue-syndrome​

 

[SWAlexander]

Why did this research not progress?

Because we have no "Mr. Smith Goes to Washington"
Maybe one million Letters (not Emails) from ME patients will do the trick.

 

[datadragon]

Many strains of coxsackievirus exist. But they all belong to a group of viruses called enteroviruses. There has been progress as the NIH showed higher WASF3 levels causing the fatigue/exercise intolerance. The possibility that a virus may be a contributing factor in chronic fatigue syndrome has long been mentioned, but its only now they were talking about any mechanism of how that can be leading to the fatigue/exercise intolerance. ER Stress was one cause of higher WASF3 levels. When the team treated human muscle cells with a compound known to increase ER stress, they saw a corresponding harmful increase in WASF3. The researchers treated cells from the initial study participant with an experimental drug, called salubrinal, known to reduce ER stress. After this treatment, WASF3 levels decreased in the cells, more mitochondrial energy complexes formed, and energy production improved. https://www.nih.gov/news-events/nih...ein-may-be-linked-exercise-intolerance-me-cfs

From there its been noted that enteroviruses, dengue, Sars-Cov-2 and others can increase ER Stress-GRP78. https://forums.phoenixrising.me/thr...s-chronic-fatigue-syndrome.90582/post-2443749 Other pathways increase ER Stress that have now been mentioned so it may not require a viral onset.

 

[SWAlexander]

Millions were spent for ME research and 1.5 billion for Long Covid without results.

Good and not-so-good scientific publications have been accumulating in every ME/CFS computer since the beginning of the illness. Years went by and we are still without any chance of medical help or cure.

How much longer will we be ignored?

 

[hapl808]

Millions were spent for ME research and 1.5 billion for Long Covid without results.

Good and not-so-good scientific publications have been accumulating in every ME/CFS computer since the beginning of the illness. Years went by and we are still without any chance of medical help or cure.

How much longer will we be ignored?

HIV still gets $3b every single year. That's why we have effective treatments and HIV specialists. Meanwhile in three years Long Covid got $1.1b. Keep in mind during the same period HIV got $9b. I think ME/CFS used to get like $20m per year? So it would take 150 years to get the same amount of funding that HIV gets in a single year.

This is why we have no progress. And who has been at the helm? The only person directing public health for that long is Anthony Fauci. He took over NIAID the same year as the Incline Village outbreak in 1984. That's the institute for Infectious Disease. He dismissed and marginalized any effort to study ME/CFS for forty years.

These people are the reason millions have suffered, and they are the reason that many in the Long Covid community have joined our ranks. Until they fund ME/CFS and LC at the same level of HIV, we'll see no progress.

And as much money as HIV has gotten, the USA has spent more on the Ukraine war than on the entire history of HIV research.

That's to say nothing of Iraq and Afghanistan.

Research requires money, and US politicians do not care about sick people.

 

[Rufous McKinney]

These people are the reason millions have suffered

and they also watched Rachel Maddow's glowing interview

Its a HUGE problem that a government agency allows one individual to dominate it for many decades.

Its appalling.

 

[Viala]

If they prefer to fund a war on the other side of the globe than to support their own sick citizens waiting for help for decades, they do not work for the people, but against them, they work only in their own interest. Same thing goes to 'dismissing' ME/CFS and $1.1b research that produces zero results, no mistake. They do not work for us anymore.

 

[Treeman]

I often think that as a species we're not that bright. We spend huge amounts of money on wars and supporting the collection of huge amounts of money for a small minority of people.

When in reality we all want to live long healthy lives. The profits should be spent on medical advancements as even extremely wealthy people are still going to get sick and die. That money's not much use then.

 

[heapsreal]

Just read the book Olsers Web if you really want to get frustrated by the progress of research in cfsme. It gives you the run down of the history of cfs through the early 90s and all the mismanagement and explains why we are in the mess we are in today.

 

[Viala]

I often think that as a species we're not that bright. We spend huge amounts of money on wars and supporting the collection of huge amounts of money for a small minority of people.

When in reality we all want to live long healthy lives. The profits should be spent on medical advancements as even extremely wealthy people are still going to get sick and die. That money's not much use then.

I think we haven't evolved much in general as a species. The system we live in is still oppressive and set to support the strongest and the wealthiest, the ones that are not that lucky are being left behind. Most people either do not see it or don't want to see it, at least until they are affected themselves.

I've been thinking about disbelief we often face with this disease and I came to a conclusion that this is a general phenomenon. People are disbelieved on a regular basis anytime something goes beyond someone's personal experience or a comfort zone, which creates a lot of problems that are dragging the society down, unaddressed. We should be past that point a long time ago as a civilized species.

 

[Jadzhia]

'Yuppie flu' I remember that label. Trivialised from the start. 🤬

 

[Treeman]

'Yuppie flu' I remember that label. Trivialised from the start. 🤬

Even the term, "yuppie flu" demonstrated that there was only belief that people who were of a professional level in society were affected by the illness and worthy of consideration.

 

[anne_likes_red]

I was diagnosed in that era. My understanding was doctors at the time were noticing this was occurring notably in high achieving individuals (young upwardly mobile or whatever "yuppie" came from).
I wasn't a yuppie I was still at school but at the time of ME onset I was very physically active and high achieving academically. The contrast after onset meant my GP took me seriously and I got thoroughly tested by multiple specialists.
I don't believe doctors at that time thought only professional people in society were worthy of consideration, but agree that term is pretty demeaning. At least it fell out of favour!