If only we knew a time frame

[Hopeful1976]

If only we had a time frame for an end to this suffering... even if it was 10 years, at least there would be an end in sight.
I could cry today. I could cry all day.

 

[tiredowl]

Yeah I think it's been almost about 10 years for me soon.
I'm sorry we are all suffering. At least this community exist, where we can share knowledge.

 

[maybe some day]

@Vicki Cole true words spoken.

I was told in the beginning 3 to 5 years..ha! So far Im nearly 6 times that.

 

[Pink]

Yes,no end in sight, no hope for any treatment or cure, no legitimacy to our illness, just endless suffering.
I am sorry you're crying, I do too.

 

[Hip]

If only we had a time frame for an end to this suffering... even if it was 10 years, at least there would be an end in sight.

For some ME/CFS patients there are treatments available now which can end or ameliorate their ME/CFS. Only recently I was chatting to a person in full remission from his cytomegalovirus-associated ME/CFS for many years, courtesy of the drug Valcyte.

 

[msf]

Also, the difference between when you were told 5 years and now is that then there weren't the same calibre of scientists and there wasn't the same level of funding. If you look where the big names are going, it's in roughly the same direction, and this time it's based on replicated tests rather than hunches or contamination of samples.

If you are able to follow the science, I don't think there is a reason to be pessimistic (not compared with the situation just 10 years ago anyway), but there is good reason to be realistic, and look at the kind of timeframe Lipkin talks about (5 years) and see that as the best case (in terms of funding etc) . However that is just his research - the dca study showed things can come out of left-field, things that might have a real impact on patients health.

 

[perrier]

For some ME/CFS patients there are treatments available now which can end or ameliorate their ME/CFS. Only recently I was chatting to a person in full remission from his cytomegalovirus-associated ME/CFS for many years, courtesy of the drug Valcyte.

Dear Hip
How long did it take for this chap to get into remission? And when you say full remission, does this mean the chap went back to work?

 

[perrier]

For some ME/CFS patients there are treatments available now which can end or ameliorate their ME/CFS. Only recently I was chatting to a person in full remission from his cytomegalovirus-associated ME/CFS for many years, courtesy of the drug Valcyte.

The point Hip is making also begs the question: which types of CFS so far lead to remission?

Secondly: are there doctors at the moment who are able to address the various sub-types of CFS/ME. The reason I ask is because patients are often having to go to many many doctors.

 

[msf]

I would add that there are already things that would improve lots of patients health out there, such as trazodone and the fodmap diet. They won't help everyone but I think everyone should try them, as there are good scientific justifications behind both.

 

[Dakota15]

I, for one, think there is a lot of hope with research - I understand our urgency level is sky high but there is a lot of vested interest from a lot of qualified individuals trying to help as best they can. For that, I'm thankful.

 

[perrier]

also, the problem is that folks are suffering at different levels; those in the worst shape are finding it hard to hold on.

 

[alkt]

I got through the first ten years because there wasn't a time frame . I constantly told myself it would get better in just a couple more weeks. I now know I was deluding myself but it was a survival mechanism that worked for me. now I do not look ahead or try to think about my possible future considering my present state of knowledge and being a pragmatic person living for the moments is what gets me through the hell that this disease drags us into so smile at the devil it will upset him.

 

[perrier]

The other really serious issue (often discussed) is the blasted name of this illness. Here in Canada, just utter the phrase Chronic Fatigue Syndrome, and the health professional will immediately think you are a little tired and some exercise should help you out. This is dreadfully serious. If a patient with ME turns up in hospital they do not take them seriously or as seriously as one with MS because of this utterly stupid name. And here we are, still using it.

 

[Hip]

How long did it take for this chap to get into remission? And when you say full remission, does this mean the chap went back to work?

The person in question is a member of this forum, and he summarizes how Valcyte got him from moderate ME/CFS to full remission in this post.

The point Hip is making also begs the question: which types of CFS so far lead to remission?

I have read accounts from Dr Chia of oxymatrine putting patients with enterovirus ME/CFS into remission, and there is the above story of Valcyte putting cytomegalovirus ME/CFS into remission.

So these are examples of patients going into remission as a result of treatment; but these remission stories are quite rare, and these treatments certainly do not work for every patient; though some patients may improve on such treatments, even if they don't achieve full remission.

 

[JBoneske]

The other really serious issue (often discussed) is the blasted name of this illness. Here in Canada, just utter the phrase Chronic Fatigue Syndrome, and the health professional will immediately think you are a little tired and some exercise should help you out. This is dreadfully serious. If a patient with ME turns up in hospital they do not take them seriously or as seriously as one with MS because of this utterly stupid name. And here we are, still using it.

This is totally it. How in hell did this title start and how the hell is it still used? It’s ridiculous. It’s like crying wolf too many times. Sounds like a hypochondriac thing.
Obviously it’s a stupid ass name that just begs for failure and to be looked down upon.
Also, as you all know, it’s way to real. It’s worse than MS and other things but those things get all the respect and attention in the world.
And yeah, it would be so cool if you knew when it was going away. Can’t imagine what a relief that would be.

 

[Intuition]

Right on. I think the not knowing is the worst part. A 5 year prison sentence is doable when you know the end date. Our condition is a life sentence with the possibility of parole after a number of undertermined years.

 

[Learner1]

In a way, having a less common stage 3 cancer before this helped me prepare for this. I had to face mortality alongside others, some who beat the odds, and many many others that didn't.

I learned that trusting doctors at big, fancy institutions with well-financed clinical trials sometimes led down the path to disaster, and even for those that survived to horrendous side effects, like lymphedema, neuropathy, chemo brain, and mitochondrial damage. And that it paid to do one's own research, think outside the box, and wisely choose mainstream and alternative tools to become cancer free.

There is no timeframe there, either, and I've seen people battle cancer steadily for years and lose, as well as surprising recurrences years later. Participating in support groups helped me cope and taught me survival skills just as PR is doing for me now.

But, there's a vast discrepancy between cancer patients' situations and those of ME/CFS patients.

Cancer is taken more seriously and there's better funding, more tools that mainstream medicine and insurance companies support, and a plethora of warm and free support in communities and from the general public.

This disease make a you feel like a pariah sometimes, and that is hard.

But feeling sorry for ourselves isn't productive. As was pointed out earlier, being familiar with the research and working with doctors who are willing to help can greatly improve our outcomes. There are no perfect answers, though, and I wish there were...

 

[IThinkImTurningJapanese]

A 5 year prison sentence is doable when you know the end date.

But you don't know the end date.

For example, what if you were attacked in prison and had to fight for your life. What if during that altercation you inadvertently, or perhaps not, killed your attacker? Then you might be there for life.

Our condition is a life sentence

Maybe, maybe not. That you can't know either.

 

[Wishful]

The inconvenient terms used for this disorder certainly has caused victims extra problems. There's not much point in trying to change it at this point. Once the researchers find the (a?) major factor, they can come up with a better term that can get some respect.

 

[alex3619]

However that is just his research - the dca study showed things can come out of left-field, things that might have a real impact on patients health.

I expect big announcements later this year. Its just hard to guess how big. Now we have a clue about where to focus research, unlike thirty years ago, discoveries are happening faster and faster.