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Jen Brae '20 years' qoute

neweimear

Senior Member
Messages
215
I just read a quote from Jen Brae that it takes 20 years for drugs to translate from research into clinical practice. How depressing. I had accepted we may have to wait ten years for treatment, not a cure. But 20??? May as well throw in the towel if that's the case. My hope is that once we get wind of whatever drugs are in trial, assuming they are repurposed ones, we might be lucky enough to get our doctors to prescribe off label.
That qoute really knocked me back. What do you think? 20 years? I doubt Ron Davis sees whitney waiting 10 years, not to mind 20. Ron will probably be long gone by then, given that he is 76 now.
 

perrier

Senior Member
Messages
1,254
I just read a quote from Jen Brae that it takes 20 years for drugs to translate from research into clinical practice. How depressing. I had accepted we may have to wait ten years for treatment, not a cure. But 20??? May as well throw in the towel if that's the case. My hope is that once we get wind of whatever drugs are in trial, assuming they are repurposed ones, we might be lucky enough to get our doctors to prescribe off label.
That qoute really knocked me back. What do you think? 20 years? I doubt Ron Davis sees whitney waiting 10 years, not to mind 20. Ron will probably be long gone by then, given that he is 76 now.
Dear neweimear
I am as rattled by this as you are.....how can these young people make it.....
 

TiredBill

Senior Member
Messages
335
In the late 70s-early 80s I saw the mysterious "gay-flu" cut a swath through the gay community in the San Francisco Bay area while I was at University in Berkeley. People I knew were sick and dying. No one knew what was going on.

Now we have sophisticated drug therapies that make HIV/AIDs a treatable condition and have had them for quite some time. I know people who seemed like they were on their way out (and putting their affairs in order) twenty years ago, who are still around.

Drugs don't have to take 20 years to get to patients.

We need to find the mechanism. That is going to take advocacy and research dollars.

I never believed when I came down with my own mysterious flu in 1984 that we'd go over 30 years and still not know what triggers this disease. Not in an age of medical miracles.

But we need to know what's really going on to get effective drugs to market IMO. I think accelerated approvals could easily happen. It happened with HIV/AIDs.

Bill
 

neweimear

Senior Member
Messages
215
Mau
In the late 70s-early 80s I saw the mysterious "gay-flu" cut a swath through the gay community in the San Francisco Bay area while I was at University in Berkeley. People I knew were sick and dying. No one knew what was going on.

Now we have sophisticated drug therapies that make HIV/AIDs a treatable condition and have had them for quite some time. I know people who seemed like they were on their way out (and putting their affairs in order) twenty years ago, who are still around.

Drugs don't have to take 20 years to get to patients.

We need to find the mechanism. That is going to take advocacy and research dollars.

I never believed when I came down with my own mysterious flu in 1984 that we'd go over 30 years and still not know what triggers this disease. Not in an age of medical miracles.

But we need to know what's really going on to get effective drugs to market IMO. I think accelerated approvals could easily happen. It happened with HIV/AIDs.

Bill
Thanks Bill, I know Aids had the money though, we don't but we have more advanced technology now that can speed things up. I am severely affected and I know I won't last 20 years as I am 41 now. My heart won't last. So I hope you are right.
 

Nielk

Senior Member
Messages
6,970
I just read a quote from Jen Brae that it takes 20 years for drugs to translate from research into clinical practice. How depressing. I had accepted we may have to wait ten years for treatment, not a cure. But 20??? May as well throw in the towel if that's the case. My hope is that once we get wind of whatever drugs are in trial, assuming they are repurposed ones, we might be lucky enough to get our doctors to prescribe off label.
That qoute really knocked me back. What do you think? 20 years? I doubt Ron Davis sees whitney waiting 10 years, not to mind 20. Ron will probably be long gone by then, given that he is 76 now.

It depends. Repurposing current drugs is a much quicker process such as Rituximab which is currently prescribed for rheumatoid arthritis. If the current Fluge and Mella study on Ritux for ME/CFS shows positive results, it might not take very long to get it approved for us.
 

TiredBill

Senior Member
Messages
335
Mau

Thanks Bill, I know Aids had the money though, we don't but we have more advanced technology now that can speed things up. I am severely affected and I know I won't last 20 years as I am 41 now. My heart won't last. So I hope you are right.

AIDs did get the money. It was critical. Part of that was that AIDs was deadly (where we are just a bunch of layabouts :rolleyes:) and that community self-advocated in an extraordinary fashion and kept the pressure on to keep research dollars flowing.

I, personally, have not been loud enough. I've resolved to change that.

Next year I'll be 60. I was a fit 26-year-old when I got sick. It has been too long for this to still be a "mystery illness."

Bill
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
What always gets me about these "20 years" quotes is that they don't take into account the possibility of accelerating change in drug development. Just because it has taken that long historically doesn't mean that will be the future. There are rapid technological advances happening that may converge, and we don't know what will happen with the legal and regulatory framework.

Now to play devils advocate there could be a global pandemic or nuclear war that significantly stalls progress.

Upshot is we really can't predict
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
This was given to me by my contact at the FDA:

Under the Federal Food, Drug, and Cosmetic Act (FD&C Act), a patient may seek individual patient expanded access to investigational products for the diagnosis, monitoring, or treatment of a serious disease or condition if the following conditions are met.
  • The patient and a licensed physician are both willing to participate.
  • The patients physician determines that there is no comparable or satisfactory therapy available to diagnose, monitor, or treat the patient’s disease or condition.
  • That the probable risk to the person from the investigational product is not greater than the probable risk from the disease or condition.
  • FDA determines that there is sufficient evidence of the safety and effectiveness of the investigational product to support its use in the particular circumstance;
  • FDA determines that providing the investigational product will not interfere with the initiation, conduct, or completion of clinical investigations to support marketing approval;
  • The sponsor (generally the company developing the investigational product for commercial use) or the clinical investigator (or the patient’s physician in the case of a single patient expanded access request) submits a clinical protocol (a document that describes the treatment plan for the patient) that is consistent with FDA’s statute and applicable regulations for investigational new drug (IND) or investigational device exemption applications (IDEs), describing the use of the investigational product; and
  • The patient is unable to obtain the investigational drug under another IND or to participate in a clinical trial.
 

hellytheelephant

Senior Member
Messages
1,137
Location
S W England
Jen Brea has got people listening and understanding 'our' story...and changing their opinions about this illness. It is only when public and medical opinion have shifted, that we will see real change on the research and medical front.

I think the '20 year' comment is a way to say that the solutions aren't on the table at the moment. AIDS/HIV was a death sentence....ME is currently a life sentence (for some of us), but things can change rapidly ( look at politics at the moment, or advances in technology)

The future is not known to any of us personally or on a global scale, but like the Phoenix I will continue to focus upwards.

"It is better to travel hopefully, than to arrive.":thumbsup:
 

perrier

Senior Member
Messages
1,254
The other problem is the stupid name. CFS ....give me a break.....this is not about fatigue. It's about cytokine activity, immune problems, neuroendocrine problems,severe GI problems, pots, weakness, etc etc.feeling sick like one is dying....

This name has done more damage than anything. Every time we have spoken with a physician ( not CFS Doctor) and said the diagnosis was CFS. The response was, oh, so you feel tired....

I was once told by a sufferer that PEM was impossible to describe. I was told it was a sensation like the person never had before when he/she was well. And few doctors are getting this.

AIDS meant death and there was a sexual component,so they moved on it.

But this strikes the young, you'd think they would be outraged, but not so.
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
I just read a quote from Jen Brae that it takes 20 years for drugs to translate from research into clinical practice. How depressing. I had accepted we may have to wait ten years for treatment, not a cure. But 20??? May as well throw in the towel if that's the case.
I'm an absolute layperson and just guessing. But I always take comments like this to mean rather that it takes that long to be translated into being routine clinical praxis - in guidelines, medical books, that it doesn't matter which doctor in this speciality you consult and they have heard of it, that it's officially approved, that the insurance will pay for it etc.

If there's a treatment for ME available I'm not planning on waiting until a doctor in Germany has heard of it 20 years later and until the ridiculous guideline in my country has changed but will try to travel to whatever specialist offers it. On the other hand this would probably mean we'd have to be well enough to travel and to be able to pay out of pocket.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
People are already deciding to use rituximab before it is out of trial, so for individuals this wait isn’t necessary. However, early adoption requires a few privileges

1 the money or insurance to pay
2 the cognitive ability to understand and research what’s available
3 not being too sick to travel
4 having balls of steel /nothing to lose from getting worse

Becoming mainstream eg in NICE guidelines will take longer. A comment like that which stayed with me is on average it takes 7 years from doing a trial to getting it written about in textbooks.

I think it’s probably more of an advocacy strategy type comment though TBH. If we don’t make a noise it could take another 20 years, but we can accelerate that. My hunch is useful drugs already exist and can be repurposed or used off label.
 

Molly98

Senior Member
Messages
576
People are already deciding to use rituximab before it is out of trial, so for individuals this wait isn’t necessary. However, early adoption requires a few privileges

1 the money or insurance to pay
2 the cognitive ability to understand and research what’s available
3 not being too sick to travel
4 having balls of steel /nothing to lose from getting worse

Becoming mainstream eg in NICE guidelines will take longer. A comment like that which stayed with me is on average it takes 7 years from doing a trial to getting it written about in textbooks.

I think it’s probably more of an advocacy strategy type comment though TBH. If we don’t make a noise it could take another 20 years, but we can accelerate that. My hunch is useful drugs already exist and can be repurposed or used off label.

Jenny did you managed to get to see Unrest today with it being in Bristol?
 

neweimear

Senior Member
Messages
215
People are already deciding to use rituximab before it is out of trial, so for individuals this wait isn’t necessary. However, early adoption requires a few privileges

1 the money or insurance to pay
2 the cognitive ability to understand and research what’s available
3 not being too sick to travel
4 having balls of steel /nothing to lose from getting worse

Becoming mainstream eg in NICE guidelines will take longer. A comment like that which stayed with me is on average it takes 7 years from doing a trial to getting it written about in textbooks.

I think it’s probably more of an advocacy strategy type comment though TBH. If we don’t make a noise it could take another 20 years, but we can accelerate that. My hunch is useful drugs already exist and can be repurposed or used off label.
Yes but how do we find out what these useful drugs are that can be repurposed?? Lipkin mentioned clinical trials recently. And Dr.Davis is testing all fda approved compounds, I hope he gives some update soon other than atp and pyruvate as those aren't treatment options.
 

neweimear

Senior Member
Messages
215
B
People are already deciding to use rituximab before it is out of trial, so for individuals this wait isn’t necessary. However, early adoption requires a few privileges

1 the money or insurance to pay
2 the cognitive ability to understand and research what’s available
3 not being too sick to travel
4 having balls of steel /nothing to lose from getting worse

Becoming mainstream eg in NICE guidelines will take longer. A comment like that which stayed with me is on average it takes 7 years from doing a trial to getting it written about in textbooks.

I think it’s probably more of an advocacy strategy type comment though TBH. If we don’t make a noise it could take another 20 years, but we can accelerate that. My hunch is useful drugs already exist and can be repurposed or used off label.
Balls of steel....I love it!!!!
 

RYO

Senior Member
Messages
346
Location
USA
I am hopeful that the NIH intramural study will uncover a clue to biologic basis of ME/CFS. Assuming they come up with a lead, the next phase will be testing potential treatments within 5 years?

I watched video of interview with NINDS director. I like his war analogy of storming the beach to gain a foot hold. If the research community fails to come up biologic basis for this disease, then we may be relegated to shotgun experimental treatments.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,952
20 years is not set in stone, a repurposed drug could be put into clinical trials immediately, and if its low risk we could probably talk our GPs into prescribing it off label.
I suspect that statement was meant to light a fire under the feet of organizations to get money allocated to research ASAP
 

pamojja

Senior Member
Messages
2,380
Location
Austria
I suspect that statement was meant to light a fire under the feet of organizations to get money allocated to research ASAP

Exactly. A couple of times heard the more definite number of 17 years it takes to put medical findings into practice. So that's just the average time such things take.
 

CFSTheBear

Senior Member
Messages
166
I'm not sure anyone here is labouring under the notion that an effective, proven treatment is around the corner. Indeed this has never been promised. To me 10 years is no different from 20, despite it being half the size. Essentially I just have it in my head as "it's going to be a really, really long time", so as to stop fixating on whether it's 5, 10, 20 years.

My personal view is that I'll have to deal with this myself for the foreseeable, and hopefully get some level of improvement through all the usual things + finding out what supplements work for me. Then in a decade or so, if anything effective is available, that'll push me from my current level of functioning up several notches on the scale, and life will become a little easier.
 

neweimear

Senior Member
Messages
215
I'm not sure anyone here is labouring under the notion that an effective, proven treatment is around the corner. Indeed this has never been promised. To me 10 years is no different from 20, despite it being half the size. Essentially I just have it in my head as "it's going to be a really, really long time", so as to stop fixating on whether it's 5, 10, 20 years.

My personal view is that I'll have to deal with this myself for the foreseeable, and hopefully get some level of improvement through all the usual things + finding out what supplements work for me. Then in a decade or so, if anything effective is available, that'll push me from my current level of functioning up several notches on the scale, and life will become a little easier.
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....