Research since January 2017

S

Sunshine3

Senior Member (Voting Rights)
What are your views on research progress in 2017?
Increased NIH funding, 3 Collaborative Centres established.
OMF finds something in the blood is stressing cells but we don't know what it is.
Mark Davis looking at possibility of autoimmunity.
Naviaux, suramin....not too exciting as suramin years away
Intramural Study....again good but too slow.
Unrest.....will it increase funding???
NIH invest 2 million in UK biobank
CycloME has progressed to phase B so Phase A must have been reasonable
Solve doing great work
Systrum studying cardio pulmonary abnormalities in ME
Few studies on energy production problems but they all finding different things as far as I know
Ron Davis hoping to start clinical trials

Anything else? Opinions on progress??

Bottom line is we want treatment.
 
Sunshine3 said:
What are your views on research progress in 2017?
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Not much.

There hasn't been anything to get too excited about, although there are promising signs.

Hopefully 2018 will provide better research news.

The funding is looking better but it will take a bit of time to yield results I think.

It seems like things are turning for the better, hopefully 2018 will provide a breakthrough.
 
There ARE treatments, but there is no peer reviewed research papers or FDA drug trials to adequately prove it. So I now basically shut it in silence, because when I posted on the “other forum”, no one believed me. I am a highly intelligent logical person, well educated, that had a stellar career. I was used to peers clamoring to get my attention to solve complex problems, which I did easily.

I plan to write a letter to a Big Pharma company and ask for their help conducting and paying for a FDA Phase 3, double placebo trial. I am also considering starting a fundraiser campaign to raise money.

My doctor may have the biomarker, for a subset, and he has the repurposed drugs that work well on his patients. But he needs a much larger sampling. His small, private practice office is not equipped to do a trial. He needs funding. He has tried to reach out to others at an ME conference, and Vicky at the NIH. He has met with Ron and Janet, who were kind enough to invite him into their home, and he followed up with multiple emails.

Additionally, I have tried to talk to people at ME protests.

Seems any attempts made fall onto deaf ears.

If no one takes my doctor seriously, or takes me seriously, then nothing will happen. My doctor will retire, and his work will be lost. Eventually I will drop out of posting to ME forums, and my knowledge will be lost too.
 
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MErmaid said:
letter to a Big Pharma company and ask for their help conducting and paying for a FDA Phase 3, double placebo trial. I am also considering starting a fundraiser campaign to raise money.

My doctor may have the biomarker, for a subset, and he has the repurposed drugs that work well on his patients.
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Do you have any connections to the pharma you want to conduct a trial on their drug? Developing a relationship with an employee may be more effective than a 'cold call' letter. Perhaps some folks in the community have a connection to your pharma. Is it Gilead per chance?
 
Someone who works for GSK and has a sister who has ME, regularly attends the Invest in ME annual research conference in London. I spoke with her a couple of years ago, but do not know her name.
I know this is a long shot, but maybe someone else on here does know her/IiME might be able to contact her to see if she is interested in getting in touch with you....?

I think Ron has so many leads to follow at the moment and so little money, therefore not enough staff etc to pursue all he would like to.
 
@MErmaid, you could start a thread on your doctor's treatments so long as you make it clear it is unproven, and are happy for others to comment on evidence for and against, I see no reason why you shouldn't share your personal experience.

I don't remember your thread on PR. Probably before my time. So I don't know what people's objections were there. That is, unless he/she is recommending something dangerous, of course.

My problem personally when people share information about treatment that hasn't been tested in clinical trials is that I don't know what to do with that information. I have no way of assessing or acting on it so I tend to ignore it.

It's not a question of whether I believe you or not, or how intelligent you are, or how clever your doctor is, all I can go on is the published evidence. If people ignore or reject what you tell them, that's not a judgement of or rejection of you or your doctor, it is rational caution about untested claims.
 
Coming back to the subject of this thread, I think there have been big steps forward this year, for example several more pieces of evidence that our biochemistry is different which could lead to biomarkers, the NIH trial and funding of centres, the NICE guidelines being reconsidered, the PACE trial being picked apart, and the Rituximab trial finishing and awaiting publication. And Unrest raising awareness.

It doesn't add up to big change for any of us personally yet but it feels more hopeful to me.
 
Trish said:
@MErmaid, you could start a thread on your doctor's treatments so long as you make it clear it is unproven, and are happy for others to comment on evidence for and against, I see no reason why you shouldn't share your personal experience.

I don't remember your thread on PR. Probably before my time. So I don't know what people's objections were there. That is, unless he/she is recommending something dangerous, of course.

My problem personally when people share information about treatment that hasn't been tested in clinical trials is that I don't know what to do with that information. I have no way of assessing or acting on it so I tend to ignore it.

It's not a question of whether I believe you or not, or how intelligent you are, or how clever your doctor is, all I can go on is the published evidence. If people ignore or reject what you tell them, that's not a judgement of or rejection of you or your doctor, it is rational caution about untested claims.
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@Trish

I am simply responding to the first post on this thread. Do you have an issue with that?

“Anything else? Opinions on progress??

Bottom line is we want treatment.”


I have no plans, at this time to talk about the details of the treatments, nor the details of my doctors research.

As we know, there are no FDA proven treatments for ME. Everything is up for debate.

And yes, the aim is to get many drugs into clinical trials.
 
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MErmaid said:
@Trish

I am simply responding to the first post on this thread. Do you have an issue with that?
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Sorry, @MErmaid, I was addressing my second comment to myself for going off topic in my previous post, not to you for raising your doctor's work and your plans to approach drug companies. I had wandered into a discussion of what should and should not be posted here, which wasn't the topic of this thread. I did not mean to criticise your posts but my own. No offence intended. Shall I remove my posts?
 
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Trish said:
Sorry, @MErmaid, I was addressing my second comment to myself for going off topic in my previous post, not to you for raising your doctor's work and your plans to approach drug companies. I had wandered into a discussion of what should and should not be posted here, which wasn't the topic of this thread. I did not mean to criticise your posts but my own. No offence intended. Shall I remove my posts?
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Please leave your posts as-is. No offense was taken. Thanks for clarifying :emoji_koala:
 
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