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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS Collaborative Research Centers & Data Management Center Announcements

leokitten

Senior Member
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U.S.
A lot of research is like that. Knowing what is not particularly abnormal is still valuable, as long as the work is of good quality.

I totally agree with that, but that isn't my argument. My argument is that if the NIH is going to fund only 3 centers for this disease it's a shame to fund one where their research will likely not lead to treatments for another 30 years.

We've had hundreds of ME papers like that over the past 30 years, showing abnormalities. They have done very little for us so why do I want NIH to give $10 million to someone who is just doing more of that?
 
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neweimear

Senior Member
Messages
215
How do you know its going to take 30 years? You have no way of knowing that....why not email Dr.Lipkin with your concerns instead of surmising...
I totally agree with that, but that isn't my argument. My argument is that if the NIH is going to fund only 3 centers for this disease it's a shame to fund one where their research will likely not lead to treatments for another 30 years.
 

A.B.

Senior Member
Messages
3,780
We've had hundreds of ME papers like that over the past 30 years, showing abnormalities. They have done very little for us so why do I want NIH to give $10 million to someone who is justness doing more of that?

Many of these previous studies were small, which makes it hard to discover subgroups. Bigger studies could discover subgroups. Identifying one subgroup would be a significant step forward.
 

leokitten

Senior Member
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1,542
Location
U.S.
How do you know its going to take 30 years? You have no way of knowing that....why not email Dr.Lipkin with your concerns instead of surmising...

Because I read and follow research looking at the microbiome in other diseases. Regarding ME, what are you going to treat when Lipkin finds some very complex and subtle differences between patients and controls? What is it going to tell us that we could actually start working on as a treatment that would be available within the next 5 or 10 years?

The experimental tools we currently have to look at the microbiome are not very precise and do not give the concrete answers we need to gain actionable knowledge that can start the ball rolling on drug development and clinical trials that will lead to an FDA approved treatment in the next 5-10 years. Looking at the microbiome for answers in ME that lead to treatments is something that is going to take a very long time if it ever leads us to anything, and the experimental tools to do so haven't even been developed yet.
 
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leokitten

Senior Member
Messages
1,542
Location
U.S.
I couldn't agree more. He might find something ground breaking, little to nothing or something in between, only time will tell. I'm really hoping he finds something substantial and treatable.

Jim

No he won't, not from this one study he won't. One broad study looking at something as complex as the microbiome is never going to do that, if people here on PR think that it's not reality.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Many of these previous studies were small, which makes it hard to discover subgroups. Bigger studies could discover subgroups. Identifying one subgroup would be a significant step forward.

Multiple previous papers have identified subgroups and to date have any of these been a significant step forward? No, not really.
 

Butydoc

Senior Member
Messages
790
Multiple previous papers have identified subgroups and to date have any of these been a significant step forward? No, not really.
It will be interesting to see if the phase 3 trial of Mella/Fluge will identify sub groups that will most likely respond to drugs that treat autoimmunity. Presently, it is just an educated guess who might respond. My personal choice used my family history of ME/CFS and autoimmunity to make a decision. Fortunately it appears to working well for me.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
I want to mention in case anyone has forgotten...

If we already had a clear drug target for ME today, meaning we had amassed all the research and knowledge to show a very significant and treatable target in ME, then it would still be many years until we had a drug treatment available to us patients.

If we could repurpose an existing FDA approved drug for another disease we would still need to go through phase II and III clinical trials and FDA approval which would likely take 10 years. For an existing and safe non-FDA approved drug add to the 10 at least another 5 years, and to develop an entirely new drug for the target likely add to the 15 at least another 10 years. And all the above timelines assume a large pharmaceutical company is driving this because it requires an insane amount of cashflow to accomplish at the rate.

So I apologize if it upsets anyone, but I am just speaking the truth and the reality is that a broad microbiome discovery project, regardless of size, is not going to lead to any treatments for a very, very long time (decades).

To date, only a one or two companies have attempted to clinical trial microbiome targeting biotherapeutics and only for illnesses as low-hanging and straightforward as C. difficile infection and their drugs have failed miserably. The FDA also still has no idea how they are going to deal with approval of this new drug treatment modality, its the Wild West still and for the government that means additional bureaucracy and years of delays.

Ian Lipkin's work is going to forward Ian Lipkin's career and recognition way more than it will get us significantly closer to any treatment. Studying the microbiome is a hot new research field now because we know very little about it, and because of that something the NIH is interested in. From a new research field you will not get to drug treatments quickly.

Trust me I'm all for it from a research perspective to our further our basic understanding of human physiology and connection with disease, but let's not kid ourselves it will be forever until an FDA approved treatment comes from it for ME.
 
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leokitten

Senior Member
Messages
1,542
Location
U.S.
It will be interesting to see if the phase 3 trial of Mella/Fluge will identify sub groups that will most likely respond to drugs that treat autoimmunity. Presently, it is just an educated guess who might respond. My personal choice used my family history of ME/CFS and autoimmunity to make a decision. Fortunately it appears to working well for me.

I totally agree, but this work wasn't what I meant from my post. Fluge/Mella discovered this subgroup doing clinical trials of a drug for approval for use in ME. I welcome getting money from the NIH to do that.

I meant the countless discovery research studies finding ME subgroups. In the past 30 years none of these have been a significant step forward. They all found wildly different subgroups and only served to increase complete and total confusion about this disease which has a terrible effect when you want big agencies like the NIH to know ME is real and fund it. Fluge/Mella's phase III I believe will have a major effect on funding from the NIH if results are similar to the previous trials.
 
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A.B.

Senior Member
Messages
3,780
Multiple previous papers have identified subgroups and to date have any of these been a significant step forward? No, not really.

We haven't really identified any subgroups. Different levels of some molecule or something like that isn't enough to really delineate subgroups. As example, being able to say for sure that in a portion of patients the problem is some inflammatory process in the gut would delineating a subgroup in my view. The Rituximab trial will probably soon confirm that a B cell autoimmunity subgroup exists.
 
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Wally

Senior Member
Messages
1,167
@Londinium - Did not see this blog in any recent thread, so sent your suggestion to a moderator by clicking on the “Report” button and asking if your link to the blog and the information about the grant(s) coming from Jenny Spotilla’s blog could be put into a separate thread.

Maybe if the other grant recipients have a specific place online where they will be posting information about their research project, those links can also have their own thread. The new thread could also include a reference to this thread, so the information in this thread can still be accessed without having to search for it.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
@neweimear @Alvin2 now almost 3 years later where is Ian Lipkin and his amazing ME/CFS research? Absolutely nowhere.

He hasn’t published one ME/CFS paper in 2 years (while he’s published plenty on other topics) and that last paper they published on ME which we were waiting for in this thread found nothing interesting.

I know people just do not like to hear the sometimes ugly and honest truth, but Ian Lipkin now has only 2 years left to give us the treatments and diagnostics he promised in 5 years. When you get the funding his lab did he should have multiple ME projects running and be publishing at least one paper since then!
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
How do you know its going to take 30 years? You have no way of knowing that....why not email Dr.Lipkin with your concerns instead of surmising...

@neweimear @ljimbo423 @A.B. if Ian Lipkin and his lab are not publishing anything on ME in two years (while they published many papers on infectious diseases research) we aren’t going to get anywhere and he is wasting the funding he’s been given. At this rate I don’t think they will find anything meaningful at all in 30 years.

A lab of his size and with that ME funding should’ve had multiple parallel projects running, a steady stream of papers, and we should see at least another paper as a minimum by now. Total waste.
 

FMMM1

Senior Member
Messages
513
@neweimear @ljimbo423 @A.B. if Ian Lipkin and his lab are not publishing anything on ME in two years (while they published many papers on infectious diseases research) we aren’t going to get anywhere and he is wasting the funding he’s been given. At this rate I don’t think they will find anything meaningful at all in 30 years.

A lab of his size and with that ME funding should’ve had multiple parallel projects running, a steady stream of papers, and we should see at least another paper as a minimum by now. Total waste.

Word on the street is that the NIH funding for ME research centres was meagre; the first meeting of the 3(?) research centres had a lot of discussions regarding the difficulties they faced due to limited funding --- article by Cort Johnson.

NIH has been better than European Union (EU), still not enough relative to the disease burden. I've been helping with this lobbying in the EU https://www.meaction.net/2019/09/18...l-research-on-me-to-be-discussed-in-brussels/

Anything from the non-NIH research group i.e. Robert Phair, Chris Armstrong, they were looking at collagen breakdown/synthesis in ME?

@Ben H @Janet Dafoe (Rose49)
 

perrier

Senior Member
Messages
1,254
I hope the researchers look after themselves; after all, it would be devastating if they fell ill.
 
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FMMM1

Senior Member
Messages
513
Most patients are eager to hear what is actually happening with the research and with potential treatments. Is it that now all the labs are closed and things have stopped? Sadly, I found Dr. Tompkins statement really unsettling. What solace is to be taken by his statement that now more folks know what confinement is? Anyhow, he is not the empathy monitor. Patients need to know what is taking place going forward and what cannot go forward. Patients need time lines. Just comparing the way scientists talk with regard to the Covid-19 outbreak and ME, is enough to jolt one into realising how lagging things are in ME. The Covid researchers are working day and night (at least here in Quebec) to try and find treatments. Without a doubt, scientists like Dr Hanson and Dr Davis, and others I may not know of, are doing this too. But what about the rest? Is ME less critical? it's a prison sentence, lying in bed for decades plagued by a host of symptoms--and silently wondering if maybe dying would be a way to find an exit. Please researchers, please give our folks a chance.

Yes I'd like to know how Chris Armstrong & Robert Phair are progressing with their work on collagen breakdown/synthesis.

Fluge and Mella (part of the OMF group) have just published a paper "Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)"
[https://www.nature.com/articles/s41598-020-62157-x ]

There's a thread on the paper here
https://www.s4me.info/threads/human...cfs-fluge-mella-et-al-2020.14329/#post-248104
Is there something here on Phoenix?

Ron Tompkins, in his interview with Llewellyn King suggested that people with ME/their family members take a lesson from the AIDS activists in the 1980s -- shame Governments into funding ME research. There's an article here, including a link to the interview [https://www.omf.ngo/2019/12/08/the-...ity-more-than-just-an-me-cfs-research-center/]

ME Action are one of the lobby groups which work with people with ME/their families to lobby for funding for research. They have template letters to Congressional representative (USA)/members of Westminster Parliament (UK)/members of the European Parliament --- plus other lobbying materials.

I've been helping out with this petition; however, "events, dear boy, events" i.e. coronavirus has affected things!

Petition No 0204/2019
https://petiport.secure.europarl.europa.eu/petitions/en/petition/content/0204%2F2019/html/missinglink

@Ben H @Janet Dafoe (Rose49)