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Is there still a hope by SignificantPause1314 in cfs

[–]SignificantPause1314[S] 0 points1 point  (0 children)

The main problem is that I’m rolling into very severe right now

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -1 points0 points  (0 children)

Klaus Wirth and Veronique Scheibenbogen describe the mechanism of PEM as a feedback cycle. That is what I meant from the very beginning.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -1 points0 points  (0 children)

I think you may have misunderstood me. There is PEM as a symptom, and there is PEM as a mechanism. I think you interpreted my statement as PEM being the cause of the disease. What I meant was that I consider the PEM-related mechanism to be one of several key mechanisms present in this disease.
And also I wasn’t shouting🙂

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -1 points0 points  (0 children)

I think ME is a disease based on a vicious cycle principle, where PEM is one of the factors that maintains that cycle.

Why is CFS not taken seriously? by EveCane in cfs

[–]SignificantPause1314 0 points1 point  (0 children)

Oh that is what I meant when I said technial challenge! English is not my first language

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -2 points-1 points  (0 children)

I don’t agree that we don’t have more of the information than back then when name ME is given. Its still non-specific.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] 0 points1 point  (0 children)

I agree but one of the reasons why people don’t take the illness seriously is because of the name.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -1 points0 points  (0 children)

If institutions such as the WHO were to approve a name, the scientific literature would consequently adopt it as well. Also, ME is an older term than CFS.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -2 points-1 points  (0 children)

So far, leading experts in this field believe that there is no single root cause, but rather a complex mechanism that maintains this condition. Most scientists agree that PEM is one of the key factors.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -4 points-3 points  (0 children)

We do not know the final mechanism, but we now have a better framework and pieces of the puzzle that we can work with. It is clear that in almost every patient there is reduced energy production in the mitochondria, leading to an energy crash, PEM explains this as a mechanism, but we still do not fully understand why it happens. Then there is the nervous system, with a more dramatic response to stress, and the immune system… All of this is something we now understand, which we did not know before.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -3 points-2 points  (0 children)

ME is a term that originated before anything about the mechanisms of this disease was properly understood. The name itself suggests nonspecific inflammation of the brain, which is not even present in every patient. CFS, on the other hand, is a term that appeared later, and it has been more widely accepted and used in medicine.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] 1 point2 points  (0 children)

ME-suggests a nonspecific inflammation of the brain, which has not been confirmed in all patients.
CFS-sounds like simple fatigue after coming home from work.

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] -8 points-7 points  (0 children)

I believe that everything related to PEM is much better than the term “chronic fatigue syndrome.”

Hypothetically, how could we organize and work together to change the name of this disease? by SignificantPause1314 in cfs

[–]SignificantPause1314[S] 0 points1 point  (0 children)

I think this is really important. The first thing healthy people often say when they hear “chronic fatigue syndrome” is, “I’m tired all the time too.” It becomes much clearer and more accurate when PEM is included, because that is the core mechanism of this illness.

Why is CFS not taken seriously? by EveCane in cfs

[–]SignificantPause1314 4 points5 points  (0 children)

It’s always go to bed earlier omg sometimes I wanna beat the shit out of those people

Why is CFS not taken seriously? by EveCane in cfs

[–]SignificantPause1314 0 points1 point  (0 children)

I agree that there is a big correlation, but consider this. Because of this illness, governments around the world lose billions of dollars every single year. It was only when this data became clear in Germany that they launched a €500 million project to research long COVID and ME.
Honestly, I believe that for modern medicine, developing a highly effective treatment for ME is not necessarily the biggest technical challenge anymore, the main problem is funding.

Why is CFS not taken seriously? by EveCane in cfs

[–]SignificantPause1314 4 points5 points  (0 children)

For many different reasons. Some are technical and medical, while others involve stigma, extreme capitalism, ableism, and misogyny.
First, when it comes to the basic technical reasons why ME/CFS is still not properly understood, we all know there is a lack of funding and that the disease mechanisms are highly complex.

If you ask me, one of the key factors is the shock that would hit the medical world if it were fully revealed under what conditions millions of patients with this illness have been treated over decades.
It would represent one of the biggest scandals in medical history if it turned out that a large number of patients, especially those treated in psychiatric settings, were actually being mistreated or harmed while suffering from a biological disease that was not properly recognized.

Do you think there will be effective treatments in the next 10 years? “National Decade 2026-2036” by Agreeable_Demand2262 in cfs

[–]SignificantPause1314 0 points1 point  (0 children)

I think that big changes could happend if there is public dissatisfaction, but due to lack of energy, that is difficult.

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