Realistic expectation of time frame before treatment that improves function.

[Fighttolive]

With all the research being done now, what do you guys think is a realistic expectation of some therapies that might allow some suffers to have a normal life, even if it's a few days a week. I know the word "cure" is sort of taboo.. but imagine a treatment therapy that allowed you to feel like a human here and there? How do you all hold on? It seems like hope arises then is crushed.


The fear of one day being unable to function and foster the social aspect of life I crave so much..just makes me want to sleep forever, drift off into the calming darkness and maybe wake up in some sunshine.

 

[Fighttolive]

I'm thinking 10 years at the long, realistic end.. but that's ..10.. long arduous psychological peaks to climb.

 

[adreno]

Five years.

 

[Fighttolive]

Five years.

Adreno, any specific reason just educated guess?

 

[helperofearth123]

5-15 years. Just a guess! Maybe less if we are very lucky with rituximab, but I don't like the look of those side effects. Ampligen could always be approved sooner than that too as its already approved for CFS in Argentina. So I'm hopeful about that.

 

[hellytheelephant]

Hi @Fighttolive - I think everyone is different...and therefore everyone experiences ME differently. The only way for me to stay sane is to take it day by day...and try not to project into the future. No one on this planet knows what the future will hold for them- even the healthiest person today might be sick tomorrow.

Secondly, without sounding like Pollyanna, there is always something to give thanks for...for example, you have written on PR, so you a) can see b) can read c) have a computer d) have internet access.
Many people can't do a ) and b)....and let's face it, life is really enhanced by c) and d) . I was originally chronically sick in the days before mass computer use or internet forums so I know what I'm talking about.

The times I feel in danger of slipping through the cracks I reach out here to someone who is really struggling. I laugh at things people have posted, I add my bit to discussions, I take virtual weekends away, or write a limerick. The point is that even on the toughest day you are absolutely not alone. Everyone who is sick with any illness today,all know what you are going through.

If...on the other hand you are experiencing feelings of desperation or suicide, then do not hesitate to get help and take medication if necessary-that can be a part of the ME picture too.

Wishing you well

 

[Daffodil]

depends how long you were sick and what treatment you try!

 

[belize44]

I agree with hellytheelephant! I have lately started trying to stay in the moment, rather than trying to project out into the future I hope for. With this illness I am realizing that all any of us have at any given time, is this moment. I had another crash that started about three weeks ago and is still going strong. I want to get all pissed off about it but what good does that ever do?

As for a cure or at least some intervention that can give us at least a semblance of what we once had, I have basically stopped hoping for it. It may come; and if it does I will of course be overjoyed, but in the meantime I must muddle on the best I can on whatever supplements and interventions that appear to be at least helping at the moment.

 

[erin]

Normal life? I'll be happy only this itch goes away and I can come out of the toilet at once in the morning. Not 3 or 4 times, or basicly spending the whole morning at the toilet.

 

[ash0787]

You can get ritux now if you go to certain countries and can afford it, not worth the risk for me personally

 

[TigerLilea]

Having had CFS/ME for 26 years now, I don't project into the future trying to figure out when we might have a treatment or cure. When I first got sick I expected back then that something would materialize within 10 years. That never happened. Another 10 years went by and still nothing. Six more years and I'm still waiting.

 

[TigerLilea]

Ampligen could always be approved sooner than that too as its already approved for CFS in Argentina. So I'm hopeful about that.

Even if Ampligen were approved for use how many of us would be able to afford to purchase it? I was told about 10 years ago that it would cost at least $10,000 Canadian per year. Our drug costs are much lower than the US so I can only imagine what it would cost in the US. Would the UK gov't cover the cost of it when they don't even believe that CFS/ME is a real medical disorder??

 

[Snowdrop]

The answer I think depends a lot on where do you live and how much money do you have so that you can pay for treatment.

In the US presently there are some people who are being treated with some success (much better Quality of life but not cured).
Some even manage to get treatment that is covered in part by insurance.

But other places where social medicine is in place the funding of treatment will take longer and probably be a battle to be fought.

Even if a diagnostic marker is maybe within 5 years and confirmation of a particular drug therapy within another 5 many will be waiting to get access to diagnosis and therapy if they need their insurance/health plan to cover the costs.

 

[ukxmrv]

Fightolive,

I'm not sure where you get the idea that a cure is some how "taboo". I've been around ME and CFS groups for decades now and there is no taboo on hoping for and encouraging research for a cure.

It's what we all want.

What do we want - A CURE!
when do we want it - NOW!

There are treatments out there showing promise for some patients however we don't know why they only work for a small group or we don't have enough information to know how many they work for.

Most things are restricted so the average patient can't try them due to money etc.

 

[OverTheHills]

As a coming up to 12 year sufferer I find it helpful to have expectations, plans, timescales etc, even if they have to be revised. This no doubt is because I used to be a project manager. To not have a plan makes me feel unprepared, even vulnerable.

I also buy a lottery ticket sometimes. I enjoy the planning about what to do with my million dollars. I have never won anything more than a few dollars, but rather than focus on the disappointment or long odds, I enjoy the riches fantasy - I'm choosing quite consciously to ignore the rational in this space. You could say I am buying a little hope.

On the practical front, I value estimates of how long till effective ME treatments are available. If I'm going to cash in my private pension to pay for treatment (probably in another country) that is going to take a looong time for my foggy brain to organise.

So I understand the original posters' desire for some specifics: people have their own ways of managing both the practicalities and the mental/emotional minefield that is the disease.

Hurrah for PR people giving their opinions and estimates about what will happen next and how long in the future before effective treatments.

I can't see it being less than 5 years in practice even with e.g. a successful Ritux trial. Publication, some sort of approval process, setting up a clinic/training people to deliver the medication...

 

[Fighttolive]

5-15 years. Just a guess! Maybe less if we are very lucky with rituximab, but I don't like the look of those side effects. Ampligen could always be approved sooner than that too as its already approved for CFS in Argentina. So I'm hopeful about that.

Are there any studies or stories of its success in Argentina? I can't seem to find anything

 

[helperofearth123]

Are there any studies or stories of its success in Argentina? I can't seem to find anything

Not sure, I can't find anything either.

 

[perrier]

These are very long wait times for folks who are bed bound enduring PEM and every other miserable symptom this horror brings on.
A day is a hardship, let alone 10 years.
There will be many suicides at this rate. Many folks won't make it...

Does anyone know what Dr Davis is working on now and what they have found?

 

[Fighttolive]

These are very long wait times for folks who are bed bound enduring PEM and every other miserable symptom this horror brings on.
A day is a hardship, let alone 10 years.
There will be many suicides at this rate. Many folks won't make it...

Does anyone know what Dr Davis is working on now and what they have found?

Hey Perrier do you mean the. Nauviax paper? (SP)

 

[Fighttolive]

Fightolive,

I'm not sure where you get the idea that a cure is some how "taboo". I've been around ME and CFS groups for decades now and there is no taboo on hoping for and encouraging research for a cure.

It's what we all want.

What do we want - A CURE!
when do we want it - NOW!

There are treatments out there showing promise for some patients however we don't know why they only work for a small group or we don't have enough information to know how many they work for.

Most things are restricted so the average patient can't try them due to money etc.

Not taboo, rather a..it's a chronic condition, so people say cure isn't possible. I'll take long term remissions thougu