Jen Brae '20 years' qoute

[CFSTheBear]

I think getting worried about how long is because our lives are at stake. How many lives could be lost between 10 and 20 years?? I am not ok with that. I don't get how you could think '10 years is no different from 20'. A day with this illness is hard enough not to mind years....

I've been severe since onset, so yes, believe me, I know how hard it is. I was saying that in my head I try to keep it as - it's a long way away, so long that it doesn't really bare thinking about or fixating on. Prior to getting ill, I'd just taken out a mortgage, which I'm now having to pay out of my lifesavings and a family loan. I will likely lose all of my 20s and possibly my 30s to this disease.

I'm not ok with that either, but what can I do? Do the best I can managing day to day, advocate for change as best I can without impacting my health, and then let things take their course. Whether it's 5 / 10 / 20 years, at this point I don't think about that.

 

[neweimear]

I've been severe since onset, so yes, believe me, I know how hard it is. I was saying that in my head I try to keep it as - it's a long way away, so long that it doesn't really bare thinking about or fixating on. Prior to getting ill, I'd just taken out a mortgage, which I'm now having to pay out of my lifesavings and a family loan. I will likely lose all of my 20s and possibly my 30s to this disease.

I'm not ok with that either, but what can I do? Do the best I can managing day to day, advocate for change as best I can without impacting my health, and then let things take their course. Whether it's 5 / 10 / 20 years, at this point I don't think about that.

Fair enough. All we can do is hope for the best. Can't wait for ritux and cyclo results. At least, 2 drugs that may help some.

 

[Alvin2]

I think getting worried about how long is because our lives are at stake. How many lives could be lost between 10 and 20 years?? I am not ok with that. I don't get how you could think '10 years is no different from 20'. A day with this illness is hard enough not to mind years....

We can't predict the future, we can only work to make it a better one. Perhaps we can find a way to increase public knowledge of ME/CFS, or convince governments to give more funding to medical research, or get Ron Davis money to test all the drugs he can.

 

[perrier]

Fair enough. All we can do is hope for the best. Can't wait for ritux and cyclo results. At least, 2 drugs that may help some.

Someone with the facts, please indicate when we will hear from Fluge and Mella . Thanks

 

[neweimear]

Someone with the facts, please indicate when we will hear from Fluge and Mella . Thanks

Results from both ritux and cyclo trials willbe published first half of 2018. We will hear nothing from them until publication of results.

 

[ivorin]

I think getting worried about how long is because our lives are at stake. How many lives could be lost between 10 and 20 years?? I am not ok with that. I don't get how you could think '10 years is no different from 20'. A day with this illness is hard enough not to mind years....

Not everyone is severe, it's hard for those that aren't to understand the full force of the state - almost as much as for those that are healthy to understand it at all. I know, I was mild for 6 years, now I'm bed-bound, it destroyed me both physically and mentally in just 9 months.

 

[CFSTheBear]

Not everyone is severe, it's hard for those that aren't to understand the full force of the state - almost as much as for those that are healthy to understand it at all. I know, I was mild for 6 years, now I'm bed-bound, it destroyed me both physically and mentally in just 9 months.

As pointed out in my subsequent post, I have been the low end of moderate, or severe since onset. So saying I "I don't understand" is slightly ridiculous.

 

[ivorin]

As pointed out in my subsequent post, I have been the low end of moderate, or severe since onset. So saying I "I don't understand" is slightly ridiculous.

Then you have balls of steel.

 

[CFSTheBear]

Then you have balls of steel.

Eh. It terrifies me but what can I do about it.

 

[ivorin]

Eh. It terrifies me but what can I do about it.

I admire all of you who have been able to take it so long. I just keep getting worse month by month. I was able to walk up until just several weeks ago. Sometimes it's hard to imagine how far you can fall in this shit of an illness before you hit the ground. Sorry to have jumped to conclusions, I'm just insanely tired with my "life".

 

[CFSTheBear]

I admire all of you who have been able to take it so long. I just keep getting worse month by month. I was able to walk up until just several weeks ago. Sometimes it's hard to imagine how far you can fall in this shit of an illness before you hit the ground. Sorry to have jumped to conclusions, I'm just insanely tired with my "life".

We all are. It sucks. Collectively we have so much to contribute to the world, no matter what age we are or what stage of life we were at before we felt the crippling blow of this illness. This time last year I was healthy as anyone, healthier in fact. Diet better than almost anyone I knew, had good physical fitness, happy etc. I haven't set foot in the flat that I own and love since then and am now having to pay a mortgage on with no income, and have to be cared for 24 hours a day by my parents, who I wish were enjoying their twilight years about now.

My point is, it sucks. It sucks so much. And I would dearly love there to be an effective treatment within single digit years. But given the track record of this field, I would rather put it out of my head and concentrate on every single thing *I* can do, to make myself better, or at least ease the burden. It's so crap, but it is one thing I have a modicum of control over. Sending you best wishes, for what it's worth.

 

[ivorin]

We all are. It sucks. Collectively we have so much to contribute to the world, no matter what age we are or what stage of life we were at before we felt the crippling blow of this illness. This time last year I was healthy as anyone, healthier in fact. Diet better than almost anyone I knew, had good physical fitness, happy etc. I haven't set foot in the flat that I own and love since then and am now having to pay a mortgage on with no income, and have to be cared for 24 hours a day by my parents, who I wish were enjoying their twilight years about now.

My point is, it sucks. It sucks so much. And I would dearly love there to be an effective treatment within single digit years. But given the track record of this field, I would rather put it out of my head and concentrate on every single thing *I* can do, to make myself better, or at least ease the burden. It's so crap, but it is one thing I have a modicum of control over. Sending you best wishes, for what it's worth.

Likewise, from the bottom of my pots-ridden heart.

Ps, I really feel the same way, I just hope the damn robots will step in to help a bit sooner than 20 years

 

[pibee]

Ps, I really feel the same way, I just hope the damn robots will step in to help a bit sooner than 20 years

They're already here! !

 

[pibee]

I just read a quote from Jen Brae that it takes 20 years for drugs to translate from research into clinical practice.

I dont know where she said it and in what context, but maybe she just quoted a research that says exactly that: it takes 17 years from research to translate into a clinical practice, prescribed by your average specialist, or a GP.

Think this is this research from 2011
http://journals.sagepub.com/doi/pdf/10.1258/jrsm.2011.110180

So all in all this wasn't just about ME/CFS. It was probably just a warning that this might happen if we dont speed things up

 

[Nielk]

This PR article "FDA Drug Development Workshop: Part Three" based on the 3013 FDA workshop on ME/CFS describes the process of fast-tracking drugs for diseases with unmet needs. (Look at #3. Drug Development and Review: FDA’s Expedited Programs for Serious Conditions)

Here is the FDA Guidance document for ME/CFS -https://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM388568.pdf

 

[JenB]

I realize it is actually 17 years and I was referring to this study: http://journals.sagepub.com/doi/full/10.1258/jrsm.2011.110180

The idea is that that is the lag between basic research to clinical translation across the board. I use that number not to say that's how long we need to wait but to help explain why there is a gap between what we know scientifically and what doctors have been trained to execute in practice. I'm trying to say our status quo is less "doctors disagree" and more "science is still permeating."

Of course, there's ways to speed this up. It's not 17 years if you are starting with human subjects or doing clinical trials of drugs that are already FDA-approved (an area that should be a key focus for us). That's why ideally we are making investments all along the pipeline: reforming guidelines based on what we already know, training doctors, investing in clinical trials of repurposed drugs, human subject studies, and basic research.

I don't feel discouraged by 17 years. It just means that achieving parity to other diseases is not enough – we need to so something far more extraordinary. But no, it's not going to happen tomorrow, by a single group, or a single study. We need massive, structural change, and that is why I view this as not only a scientific problem, but a social and political one as well.

 

[outdamnspot]

Not everyone is severe, it's hard for those that aren't to understand the full force of the state - almost as much as for those that are healthy to understand it at all. I know, I was mild for 6 years, now I'm bed-bound, it destroyed me both physically and mentally in just 9 months.

My closest friend (who I know only online, though we speak frequently on the phone) is more moderate than me. She can still walk and run errands, watch TV, tolerate drugs/supplements etc. and is married. It's very ugly, and I'm ashamed to admit it, but I struggle a lot with feelings of jealousy towards her. She does her best to understand what I'm going through, and it obviously isn't her fault, but sometimes it's impossible to control. She just doesn't know what being completely bedbound and feeling like you're fighting for your life everyday (with almost no options to improve) is like. The more sick I get, the more I just feel completely alienated from other people.

 

[neweimear]

My closest friend (who I know only online, though we speak frequently on the phone) is more moderate than me. She can still walk and run errands, watch TV, tolerate drugs/supplements etc. and is married. It's very ugly, and I'm ashamed to admit it, but I struggle a lot with feelings of jealousy towards her. She does her best to understand what I'm going through, and it obviously isn't her fault, but sometimes it's impossible to control. She just doesn't know what being completely bedbound and feeling like you're fighting for your life everyday (with almost no options to improve) is like. The more sick I get, the more I just feel completely alienated from other people.

Its so tough. But look, what if OMF come up with something in the next few years or less....I can't accept 17 years, I will be dead by then. Ron Davis does not envisage 17 years wait I'm sure. I know the feeling of not being able to relate...you are not alone. X

 

[neweimear]

Oh God....I am freaking a little. Its not going to be 17 years is it??? I had envisioned 5....10 at most for some new treatments to help us. We have had this conversation before....but 17 freaking years...anyone?

 

[alex3619]

I think 20 years is a fair comment on the duration of the drug development cycle, from early development to widespread clinical use. If a totally new drug has to be developed it might well take that long.

However, drugs that are already approved can be repurposed, and the research for that could be done in three to five years.

Vaccines are created, tested, and put to market in some cases in as little as six months. This is how vaccines not adequately tested for safety sometimes make it to market.

How fast this is depends on political will ... and ours. There are some scientific steps that cannot be rushed, but they only take a handful of years if there is funding and interest.

In the case of H. pylori, gastric ulcers and antibiotics to treat them, after it was proved these drugs worked it took about ten years .. for existing drugs. Its been claimed by a leading gastroenterologist in the US, and I blogged on this some time ago, that the drug companies forbade anyone discussing this research at any conference they sponsored. It was patients who forced the culture change by constantly hammering at the newspapers and other places to get this treatment made available. It worked, eventually. It just took ten years.

If we have a treatment, and it passes the trials, then the really important work of advocacy will begin ... getting it out to everyone. It will be a struggle, and we will need everyone who can to get involved.

For repurposed drugs, having already passed safety testing, once they are shown to be working then they can be used off-label by any doctor willing to prescribe them. Again, this is work for advocacy. How fast it happens will in part depend on us.