Poll: When do you brutally honestly think there will be a cure for ME?

[Zahr82]

I'm having trouble trying to find the message box

 

[Zahr82]

Wow, very interesting to see the poll results. So much pessimism! I'm trying to reconcile this pessimism with Whitney Dafoe's message of hope earlier this year (a portion of which I've pasted below). So is what Whitney wrote just empty words? Or is he closer to the truth than us who are not intimately involved in Ron Davis' cutting-edge research?

Exactly. Hang on, you realise most long covid people fit an me/cfs diagnosis. I myself am titering on one. Id imagine if they come up with enough money for long covid research it will apply for me/,cfs. I haven't come across too many longhaulers without pem
. And I know loads of them from discord and reddit. I like to be optimistic about it. I have to be or suicidal thoughts take over. Most of you guys have stronger and more resilient minds than me

 

[EtherSpin]

Long covid will force funding into post viral illness on a scale never seen before. This is the time 🤞

I want to believe this, only problem is, a few people I know who thought it wasn't possible actually got it & now downplay it because since C19, their workplaces have adjusted for them not to need to commute and do 9 to 5 anymore and they save a tonne of time and energy by working remotely.
I also hope the seriousness of Long Covid isn't gone for many peoples minds now due to the lack of a more dangerous variant (like they way they feared Delta) - I think LongC19 got lots of coverage cause everybody thought they could get it and now people think they are covered against omicron via innoculation or because they had it already

hope Im wrong and the general public cares about it

 

[Zahr82]

I want to believe this, only problem is, a few people I know who thought it wasn't possible actually got it & now downplay it because since C19, their workplaces have adjusted for them not to need to commute and do 9 to 5 anymore and they save a tonne of time and energy by working remotely.
I also hope the seriousness of Long Covid isn't gone for many peoples minds now due to the lack of a more dangerous variant (like they way they feared Delta) - I think LongC19 got lots of coverage cause everybody thought they could get it and now people think they are covered against omicron via innoculation or because they had it already

hope Im wrong and the general public cares about it

I had delta, which caused long covid for me. Unfortunately, the numbers of long covid sufferers has jumped up recently. This is because omicron is being written off as a cold, because governments care about only the economy , and pleasing the majority. Omicron is not a cold, it doesn't cause as much long covid as delta. But its everywhere, resulting in more long covid sufferers. Anyway, the impact of the work shortages will result in some well funded research, im hoping

 

[Zahr82]

I remember, at the beginning of the pandemic. I was reading the guardian , most people were saying, we will never get a vaccine for covid, it takes 20 years. I told them they are all wrong, and they actually laughed at me. I had the last laugh.

 

[jim777]

If you want me to be brutally honest I checked the 100+ years option. I would have checked 1000+ years if it were an option.

I have wasted an enormous amount of money and time seeing "doctors" with nothing to show for it over the last 25+ years.

Recently one of my closest loved ones had her cancer misdiagnosed for years and then died an awful death from it. The treatments were worse than the disease. I was completely disgusted with her "care" and I doubt there was any improvement in the care she got over what she would have got in 1982.

I live in the United States and we are 60th down the list in life expectancy by country for Men the last I checked.

I think my only option is to get to another country where I might have a shot of getting help. But I'm too sick to travel.

So that is why I'm here....I think the only way I will ever get well is if I figure it out for myself.

 

[Zahr82]

If you want me to be brutally honest I checked the 100+ years option. I would have checked 1000+ years if it were an option.

I have wasted an enormous amount of money and time seeing "doctors" with nothing to show for it over the last 25+ years.

Recently one of my closest loved ones had her cancer misdiagnosed for years and then died an awful death from it. The treatments were worse than the disease. I was completely disgusted with her "care" and I doubt there was any improvement in the care she got over what she would have got in 1982.

I live in the United States and we are 60th down the list in life expectancy by country for Men the last I checked.

I think my only option is to get to another country where I might have a shot of getting help. But I'm too sick to travel.

So that is why I'm here....I think the only way I will ever get well is if I figure it out for myself.

Sad isn't it. I genuinely think in the next 100 years. The world itself could actually start falling apart

 

[max_yazhbin]

the cure isnt going to come from laboraties trying to recreate the disease in yeast, the cure will comee from patient doing hundreds of experiments combined with laboratory findings to zero in on various problems with their health and systematically figuring out what works and what doesnt.

 

[keepontruckin]

Decades of trying has not brought more relief than warm sunshine on skin and some probiotics in our case. I wish creative thinkers would analyze what it is about the hot sunshine that makes such a difference in symptoms - less pain, less fatigue - someone said it lowers th-17.

 

[Springbok1988]

I think our biggest hope is the use of artificial intelligence in the research and medical fields. AI is getting so good at taking all available data on a subject and putting it together. Someday, without a doubt, this will be applied to systemic illnesses. AI will find cures for things and, if not, ask the right questions that need to be researched.

 

[Alvin2]

I voted 26-50 years which i think is optimistic at the rate we are going.
That said we will probably get a treatment much sooner than a cure, which i expect in 26-50 years. An actual cure i expect much longer unless something drastic changes.

 

[caledonia]

There already is one (for some people) and it's been around about 20 years.

 

[Zahr82]

There already is one (for some people) and it's been around about 20 years.

What is it?

 

[Woodyrob]

I think if we are waiting for ME/CFS research to find a cure then it will take longer. But I personally believe it will be a serendipitous discovery that will be stumbled upon when someone has tried a random existing drug (or drug combo), either on themselves or on a patient group.
That’s happened with other diseases, even cancer therapies.

But I think with the advent of mLong Covid, in millions more people developing ME/CFS we will see some quite wealthy people with family members desperate to donate lots of money into funding research. The acceleration already of government funded research is absolutely amazing. Long Covid with PEM I believe is ME/CFS. Or so similar that whatever they get treated with will help us too.

I’m actually normally a pessimist, but I’m quite confident we will see change in the way of at least a treatment to improve us enough to make our lives better, if not a cure soon. (Half better would satisfy me!!)

its a crazy time for those thinking of ending it, considering all the new research that’s being fast tracked. Definitely worth hanging around to eventually see yourself get that treatment. It will be the happiest day of your entire life!!!!
Last I read 16 new Long Covid studies a week are being published compared to ME/CFS 1 to 2

Here’s an article on good discoveries by mistake
https://theconversation.com/five-se...-starting-with-the-oxford-vaccine-dose-150768

 

[caledonia]

What is it?

The Cutler mercury chelation protocol, for those who have mercury or other toxic metals as the cause of their ME. I'm doing the protocol and have improved 5% on the disability scale.

I've been researching this topic a long time. I think many more people have it than they realize, although I wouldn't be so arrogant as to say it's the one thing that causes ME.

 

[EtherSpin]

friends with ME/CFS range between sub 1% up to about 10% of their previous physical capacity
Cognitive problems are the true kicker that ruins opportunities for education and employment & just a sense of still progressing as a human

due to the above, I have had enough years at 1% function to know how to do immensely well, were i for example to get back an half of my missing cognitive function or to go from 1% physical function to something like 15% and I think there is a very real chance of a lucky discovery about an existing drug or a tweak to a protocol that exists for another disease