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

[Long Haul Mono]

Cortene... I heard of this recently and thought "doesn't THC do similarly?", but likely to be less toxic (as prescription drugs are sometimes known to be).

 

[PhoenixDown]

Yes, the lack of actual damage is definitely grounds for optimism. My experience with multiple full-but-temporary remissions is that ME is a state that we can switch into and out of over a space of minutes

My experience is the opposite, 15 years of ME that has never remitted and over exertion has caused permanent worsening.

I'm not sure when there will be a cure but just having a test that proves we have ME and that the symptoms are consequential (it progresses) would go a long way toward helping patients in the future.

I was made completely bed-bound by inappropriate accommodation and lack of care. My doctors refused to write a letter to the housing association to get me moved in to more suitable accommodation, and be awarded social care. They waited until I was hospitalized to award me social care and by then the damage had been done. I never recovered from it.

 

[Rufous McKinney]

State switching and feeling normal for short periods of time can be explained by normal neurochemical/micronutrient/mitochondrial balance in the brain

its odd: like the incredible debilitating weakness briefly lifts. I stroll across the street with purpose. My body feels like its sort of briefly: normal. So what you describe sounds about right: its a brief window when I'v not recently poisoned myself with IBS gut leaks, stomach issues, crashes and finally I've simply accrued a couple of extra spoons. It doesn't last long, in my case. But welcome relief.

 

[Rufous McKinney]

Cortene hypothesis explains ME/CFS very accurately.

where is the Cortene hypthesis?

. I heard of this recently and thought "doesn't THC do similarly?",

thats a really good web site! I just read thru the fascinating article on Marijuana/mexico.

 

[VisualEffect]

where is the Cortene hypthesis?

https://www.frontiersin.org/articles/10.3389/fnsys.2021.698240/full

 

[SlamDancin]

I answered 6-10 years. We’re not that close to a cure I don’t think but some of these treatments could come sooner

 

[Rufous McKinney]

https://www.frontiersin.org/articles/10.3389/fnsys.2021.698240/full

It seems I'm only reading three sentences at time, once again.

Here is Cort's article on all that: I managed to wade thru his THE GIST.

https://www.healthrising.org/blog/2021/09/03/cortene-drug-trial-chronic-fatigue-syndrome/

Can you explain your remark about THC versus Cortene? Sounds like I won't be finding any Cortene, any time soon.

 

[Rufous McKinney]

I answered 6-10 years.

this makes the most sense, actually, given the general momentum, recent breakthroughs, more folks working on it.

Today I"m entirely fascinated by Australia is going to look at our eye movements: brilliant so brilliant and really curious what they figured out there.

 

[VisualEffect]

Can you explain your remark about THC versus Cortene? Sounds like I won't be finding any Cortene, any time soon.

I don’t know anything about THC

 

[Rufous McKinney]

I don’t know anything about THC

sorry, wrong poster!

 

[SlamDancin]

THC definitely affects the HPA axis but a quick Google search doesn’t show it as a specific CRFR2 agonist so I think Cortene has a different mechanism of action

 

[Marylib]

I want to be optimistic, but I think I have run out of optimism. Seems about every ten years someone says it will happen in ten years. Sometimes someone says five years every five years. If it comes, I think it will be wonderful and it will probably be something that someone stumbles across when treating another disease.

 

[Rufous McKinney]

Something for the MS or Parkinsons folks: might help us eventually.

this is getting old, isn't it?

 

[Long Haul Mono]

...this is getting old, isn't it?

...just like waiting for an ME cure.

 

[RyeRyeBread]

I think within 6-10 years we could have a proper treatment, that could improve people to the point of just about "cured", at least quality-of-life wise. I think the damage done to our bodies is irreversible in the sense that I don't believe we will get back to "before we were sick", but I'm pretty optimistic that one day we will see the same improvements and medicine capabilities as MS, HIV/AIDs, Muscular Dystrophy, and Cystic Fibrosis have seen in recent years.

As long as there are researchers, doctors, and informed patients - there will be hope that tomorrow could be better 💛

 

[Wishful]

I think the damage done to our bodies is irreversible in the sense that I don't believe we will get back to "before we were sick",

I disagree. I think ME doesn't involve long-term damage (other than secondary effects). My temporary remissions seemed like snapping from the ME state to fully healthy again (and then back to full ME again ) over a period of minutes rather than hours. That's not long-term damage somehow reversing; that's more likely some cellular functions changing their rate of action.

Yesterday I posted a thread about a new finding about elevated levels of an enzyme in Covid patients. This enzyme 'shreds' cell membranes. Even if this is just doing partial, quickly repairable damage, it can still hinder cell functions, resulting in the symptoms we experience. Block this enzyme, and those cells could snap back to fully healthy over the space of minutes. This may not be the explanation for ME, but it's an example of a possibility that could explain ME and could lead to a treatment/cure that takes less time to return you to 100% than you spend waiting in line for the prescription.

 

[Long Haul Mono]

I just found this documentary on YouTube suggesting, that if there's funding, a cure may be found 5-6 years from now. At my age, I'm not feeling optimistic.

 

[Float]

Never. There are too many sub types. Curing them all will be the same day that we are either, highly gene edited or fused with AI. Just the same as cancers, diabetes, death etc haven't 't been cured. Doesn't mean there won't be better prevention and management though.

 

[Float]

Yes, the lack of actual damage is definitely grounds for optimism. My experience with multiple full-but-temporary remissions is that ME is a state that we can switch into and out of over a space of minutes, which implies that the core dysfunction is one of those rapid reactions (protein synthesis or some such thing).

I think it's quite possible that a PWME could go to a doctor, get a prescription, take a pill, and be back to full ME-free some minutes later.

That's definitely not my experience, switching in and out? I agree with the pill suggestion. But all you need is a supply or funding issue and no pills, back to not cured unfortunately.

 

[Wishful]

That's definitely not my experience, switching in and out?

Yes, quite a few of us have experienced temporary remissions, where we abruptly switch from full ME to full health (and then back again ). I haven't managed to do it reliably for more than a couple of times for each trigger, and haven't managed it at all for about 10 years now, but the fact that it does happen for some of us means that this isn't permanent damage, and it's a process that can reverse quickly.

There are too many sub types.

There are lots of subtypes for upstream sensitivities and downstream symptoms, but that doesn't mean that there can't be a fairly simple core dysfunction that can be treated. Cancer definitely does have multiple subtypes; ME, we simply don't know yet.