ME/CFS is a living death--why mortality isnt what matters in illness advocacy

[frozenborderline]

https://openletteropenmedicinefoundation.com/me-cfs-is-a-living-death/

https://openletteropenmedicinefoundation.com/me-cfs-is-a-living-death/


The title basically speaks for itself but the article is full of facts and figures about quality of life and how we can change our rhetorical approaches and activism based on some of these facts.

 

[frozenborderline]

@ScottTriGuy I quoted you near the end

 

[frozenborderline]

 

[perrier]

The title is brilliant. CFS/ME is most definitely a Living Death. And this focus on mortality is a cruel way of looking the other way. I remember reading articles when this illness was described as the Yuppie Flu. Congratulations on this work. How to get all this out, is another question.

 

[nerd]

I think AIDS is a valid comparison. There have been so many suicides among HIV-infected when they were still neglected like we are today. The first phase of the AIDS pandemic was a suicide pandemic.

 

[Sushi]

The title basically speaks for itself but the article is full of facts and figures about quality of life and how we can change our rhetorical approaches and activism based on some of these facts.

All very true and well stated. My question though is whether you have sent it to the right organization? OMF would already agree with you I think.

 

[bensmith]

True

 

[frozenborderline]

All very true and well stated. My question though is whether you have sent it to the right organization? OMF would already agree with you I think.

The website is about general activism regarding the omf and their refusal to look into environmental toxins in a timely manner. This post is just a more general post, branched out, not necessarily in the singular theme of the website. I agree that the omf probably wouldn't object to this. Although my question would be , if you agree, where are you leading protests at the NIH?

 

[frozenborderline]

I think AIDS is a valid comparison. There have been so many suicides among HIV-infected when they were still neglected like we are today. The first phase of the AIDS pandemic was a suicide pandemic.

Wow, i didn't know that about suicide and aids

 

[wabi-sabi]

All very true and well stated. My question though is whether you have sent it to the right organization? OMF would already agree with you I think.

For sure! Send this letter to NIH, CDC, and your congress people. They need to know.

 

[lenora]

These letters or similar have been sent to the above named organizations many times since the quality of life issue was first addressed.

Sadly, we have to realize that there are plenty of other illnesses, diseases, etc., that have people living in the same depths as we experience. If we can't get the money, then nothing can change. Research is, whether you agree or not, light years ahead of where it was even 10 years ago. Things like the fentanyl problem and then COVID have set us back...again.

There are doctors who are sympathetic to our lives but, like us, they're short on answers too. Apart from joining support groups, I have no suggestions, certainly understand the problem but can only suggest sending this info off to insurance cos., who basically control patient care in all countries. True, some/most will be discarded, but it may help to get the problem and the name out there. Yours, Lenora.

 

[frozenborderline]

Sadly, we have to realize that there are plenty of other illnesses, diseases, etc., that have people living in the same depths as we experience.

To the extent that this is true --there is more than a single illness with awful quality of life (but ME/CFS is an extreme outlier, as shown by all the statistics therein), those other illnesses also deserve more money. But an implicit point of the post is that if research funding has to be rationed, we should at least be rationed based on valid empirical measures of quality of life, such as DALY, or the other ones in the study.

These measures found ME/CFS to be a) worse quality of life and b) bigger disease burden (which includes the amount of sufferers in calculations, not just the quality of life and impact on economics ) than many very serious diseases... a) and b) differ in some cases but for a) ME/CFS was found yo be worse than all the major illnesses including various cancers , MS, depression, and for b) the ideal funding for ME/CFS at conservative amounts (low calculations, pre covid) of sufferers was found to be 188Million dollars a year , which is over MS and certainly above most rare diseases.

ME/CFS doesnt need to be siloed when it comes to advocacy and research. There are other underlooked illnesses. We can advocate for better funding for those as well as this disease. But it absolutely deserves more funding than diseases which currently cause less suffering and have bloated budgets , like HIV/AIDS for example. A median ME/CFS moderate or severe patient in the first world is absolutely experiencing worse suffering than the HIV/AIDS counterpart. Theyre both bad diseases untreated but this is mostly due to the amazing advances in HIV/AIDS research. This may seem like a crass comparison, but these comparisons are already currently being made and the money apportioned. So if we say that it's unfair to compare the diseases and compete for funding, it wonr change that that's already happening. We will just be forfeiting a game .

If we can't get the money, then nothing can change

agreed

Research is, whether you agree or not, light years ahead of where it was even 10 years ago

I dont see any evidence of this. And I want to have hope, but I think it would be false hope. What I find when I look at ME/CFS history is history repeating itself , studies where we rediscover things that were first found in the 80s in lake tahoe... constantly.

 

[frozenborderline]

can only suggest sending this info off to insurance cos., who basically control patient care in all countries.

There are not enough real treatment options based on robust science for this to matter much. Maybe for palliative care and maybe for cci surgeries , but those are comorbid conditions, not treatments for ME/CFS. I think the priority is to get even close to the fundi ng and research needed to find a treatment before we pressure insurance companies to fund treatments. We dont have much in the way of evidence backed treatment for ME/CFS specifically

I dont see the problem with the original post. It wasn't so much a specific argument for doing a very particular thing as much as an illustration of the state of things. Educating people on the state of things may be slow and boring work, but it's a start. I dont personally have hope that it can work, but I detach hope and doing the work. Buddhists have noted that hope can be a bad thing sometimes , as it is future oriented rather than present oriented. Every day I usually think there is no hope but I still continue working on things like this. Because the process yields results , mot future oriented and product oriented approaches

 

[frozenborderline]

It's been awhile since I engaged with this. Wondering what people think about this especially newcomers to the website

 

[lenora]

To the extent that this is true --there is more than a single illness with awful quality of life (but ME/CFS is an extreme outlier, as shown by all the statistics therein), those other illnesses also deserve more money. But an implicit point of the post is that if research funding has to be rationed, we should at least be rationed based on valid empirical measures of quality of life, such as DALY, or the other ones in the study.

These measures found ME/CFS to be a) worse quality of life and b) bigger disease burden (which includes the amount of sufferers in calculations, not just the quality of life and impact on economics ) than many very serious diseases... a) and b) differ in some cases but for a) ME/CFS was found yo be worse than all the major illnesses including various cancers , MS, depression, and for b) the ideal funding for ME/CFS at conservative amounts (low calculations, pre covid) of sufferers was found to be 188Million dollars a year , which is over MS and certainly above most rare diseases.

ME/CFS doesnt need to be siloed when it comes to advocacy and research. There are other underlooked illnesses. We can advocate for better funding for those as well as this disease. But it absolutely deserves more funding than diseases which currently cause less suffering and have bloated budgets , like HIV/AIDS for example. A median ME/CFS moderate or severe patient in the first world is absolutely experiencing worse suffering than the HIV/AIDS counterpart. Theyre both bad diseases untreated but this is mostly due to the amazing advances in HIV/AIDS research. This may seem like a crass comparison, but these comparisons are already currently being made and the money apportioned. So if we say that it's unfair to compare the diseases and compete for funding, it wonr change that that's already happening. We will just be forfeiting a game .
agreed
I dont see any evidence of this. And I want to have hope, but I think it would be false hope. What I find when I look at ME/CFS history is history repeating itself , studies where we rediscover things that were first found in the 80s in lake tahoe... constantly.

Well, I can tell you with certainty that Lake Tahoe wasn't even close to the first outbreak of this problem. Doctors and nurses were affected by the outbreak at The Royal Free Hosp. at the end of the polio epidemic, and many outbreaks long before that. No answers. Unfortunately, it's not until you have something that you realize the depths of the problem. That's across the board....for everything. Yours, Lenora.

 

[frozenborderline]

Well, I can tell you with certainty that Lake Tahoe wasn't even close to the first outbreak of this problem. Doctors and nurses were affected by the outbreak at The Royal Free Hosp. at the end of the polio epidemic, and many outbreaks long before that. No answers. Unfortunately, it's not until you have something that you realize the depths of the problem. That's across the board....for everything. Yours, Lenora.

Yes I know there were earlier outbreaks. Tahoe was what turned the disease into a named syndrome with ICD code and everything , in the US

 

[frozenborderline]

I think this is still an important point for advocacy. The CDC and nih is murdering us through neglect, not just bc of the suicide rate in me/cfs but bc of the fact that this disease isnt living. We need to use the rhetoric that compares this to mortality more.

 

[nerd]

I think this is still an important point for advocacy. The CDC and nih is murdering us through neglect, not just bc of the suicide rate in me/cfs but bc of the fact that this disease isnt living. We need to use the rhetoric that compares this to mortality more.

I see so many analogues to the AIDS pandemic. HIV was not only ignored at first, but critical physicians and researchers were willfully silenced. Research was manipulated. Patients were psychiatrized. The LGBTQ community called it the suicide pandemic because so many wouldn't want to suffer through it without support and while being stigmatized for all sorts of derogatory claims.

It's the same story with ME and Post-Covid.

 

[frozenborderline]

Hi all, I really think this is a good article to share with people new to knowing about me/cfs. Its concise and clear with lots of statistics that show how bad quality of life in me/cfs is. it also makes arguments about mortality not being the main issue in disease in general , or the only issue. I would appreciate it if people continued to read but also shared this very widely.

 

[seamyb]

I agree with the headline.

Under International law there are situations where it is legal to kill.

There are none where it is legal to torture somebody.