REAP: A platform to identify autoantibodies that target the human exoproteome, 2021, Wang et al

Ron said:
Aaron Ring at Yale University is very interested in running some ME/CFS samples on the REAP platform. He asked if I knew of someone who could provide samples. I contacted Solve to see if they
could help him. They failed to follow up with him. I then contacted Dr. Lipkin and asked if he could assist in anyway and he did not answer my email or contact Aaron.
Click to expand...

@Andy @Hutan
I highlighted that Aaron Ring at Yale University is very interested in obtaining ME/CFS samples to assess them using the REAP platform; e.g. to Vicky Whittemore (NIH), & Maureen Hanson (OMF), both have contacted Aaron and offered samples. Jonas Bergquist (OMF) also offered to assist but that seems superfluous given the other offers.

Not my place to comment about Solve ME's policy but as I understand it, if you wish to obtain samples from their biobank then you need to submit an application and this is considered i.e. against the "policy" which formed part of the "understanding" under which samples were donated.

I was very impressed by the response from researchers i.e. to assist in assessing this technology (REACH) in ME/CFS.
 
FMMM1 said:
Not my place to comment about Solve ME's policy but as I understand it, if you wish to obtain samples from their biobank then you need to submit an application and this is considered i.e. against the "policy" which formed part of the "understanding" under which samples were donated.
Click to expand...
I don't understand this comment.
 
FMMM1 said:
@Andy @Hutan
I highlighted that Aaron Ring at Yale University is very interested in obtaining ME/CFS samples to assess them using the REAP platform; e.g. to Vicky Whittemore (NIH), & Maureen Hanson (OMF), both have contacted Aaron and offered samples. Jonas Bergquist (OMF) also offered to assist but that seems superfluous given the other offers.

Not my place to comment about Solve ME's policy but as I understand it, if you wish to obtain samples from their biobank then you need to submit an application and this is considered i.e. against the "policy" which formed part of the "understanding" under which samples were donated.

I was very impressed by the response from researchers i.e. to assist in assessing this technology (REACH) in ME/CFS.
Click to expand...
Yet you are obviously commenting on their policy. Personally, I'm glad that Solve are applying the rules that they set in place when patients gave their samples to them. You imply that the NIH and OMF are handing around patients samples without taking into account patients wishes and any ethical considerations - I don't view that as being good for the integrity of science, and it is not a route that we will be following with the data that DecodeME generates.
 
Andy said:
Yet you are obviously commenting on their policy. Personally, I'm glad that Solve are applying the rules that they set in place when patients gave their samples to them. You imply that the NIH and OMF are handing around patients samples without taking into account patients wishes and any ethical considerations - I don't view that as being good for the integrity of science, and it is not a route that we will be following with the data that DecodeME generates.
Click to expand...

My usual caveat that I know nothing about how these things are done.

On the face of it though it would seem right to me that Solve would have to follow the rules they set. But . . .
it would seem that those rules are being rather restrictive to the biobank having anything other than narrow utility. Maybe Solve need to look at their rules or do they no longer collect new samples?
 
strategist said:
When patients are studied as group, do any autoimmune diseases exist which involve only autoantibodies from long lived plasma cells?
Click to expand...

There are a number of autoantibodies for which we see little if any fall in any patients with rituximab - antibodies to Sm, RNP, Ro (Sjogren's) for instance. Lupus has a mix of antibodies that fall nicely (anti-DNA) and once that don't like Sm.

If ME were autoantibody driven it would presumably have to be by antibodies that do not fall in most if not all cases for there to be a null result from rituximab. So like Sjogren's we would be looking for an autoantibody predominantly made by long-lived plasma cells.

The autoantibodies that have raised interest recently are to muscarinic ACh receptors or adrenergic receptors. These did fall with rituximab though, which rather suggests that they are not important.
 
Snowdrop said:
My usual caveat that I know nothing about how these things are done.

On the face of it though it would seem right to me that Solve would have to follow the rules they set. But . . .
it would seem that those rules are being rather restrictive to the biobank having anything other than narrow utility. Maybe Solve need to look at their rules or do they no longer collect new samples?
Click to expand...
Define narrow utility. Without knowing for certain, I would imagine that as long as any application for their samples could show that the related study had received ethical approval and didn't breach any conditions, if any, that had been set by by the people giving the samples then there wouldn't have been any issue.

From the little information that we have, it seems the developer of this new analysis found those requirements onerous, and I'm concerned that the NIH and OMF are implied to have been happy to bypass such minimal criteria and just hand over samples to them.

Solve aren't doing anything unusual, it seems that the NIH and OMF are.
 
Thanks for your response @Andy. That provides some additional context. My comment was based on my usual lack of knowing what's going on (or forgetting sometimes).

I just hope to see that biobank samples are being used (with proper approval / oversight) to further research, which I think we all do. I speak from frustration and impatience sometimes too.
 
cassava7 said:
Simmaron Research has provided ME/CFS samples to Dr Maureen Hanson's team in the recent past. It would be interesting if Cort Johnson could put Aaron Ring in touch with them.

The Stanford ME/CFS clinic comes to mind, too.
Click to expand...
After being contacted by Francis I sent the above post to Solve ME in case they have some they want to share from their Biobank. Sounds really interesting! I'll contact Simmaron as well.
 
Trish said:
I don't understand this comment.
Click to expand...
Ron said:
Aaron Ring at Yale University is very interested in running some ME/CFS samples on the REAP platform. He asked if I knew of someone who could provide samples. I contacted Solve to see if they
could help him. They failed to follow up with him. ---.[/QUOTE

I was responding to @Ron statement that "I contacted Solve to see if they could help him. They failed to follow up with him [Aaron Ring at Yale University]."

My response was that it wasn't my role to speak on behalf of Solve; however, my understanding is that if a researchers wishes to access samples, from the Solve biobank, then the researcher has to apply. The application is then considered against the policies governing access to samples. I'm guessing that Universities typically want to patent discoveries and this is the type of issue considered in an application to access samples from a biobank --- I'm really not knowledgeable about this stuff though.

Hope that makes sense.
Click to expand...
 
Andy said:
Yet you are obviously commenting on their policy. Personally, I'm glad that Solve are applying the rules that they set in place when patients gave their samples to them. You imply that the NIH and OMF are handing around patients samples without taking into account patients wishes and any ethical considerations - I don't view that as being good for the integrity of science, and it is not a route that we will be following with the data that DecodeME generates.
Click to expand...

Yes I had thought that by:
  • commenting on the fact that Solve had policies in place re access to donated samples; and
  • not commenting on the position re access in relation to samples held by NIH & Maureen Hanson (Cornell/OMF);
then that could be interpreted as suggesting that NIH & Maureen Hanson (Cornell/OMF) don't have polies in place - which I'm sure they do.

I'm hoping this will blow over.

My main point was that scientists, and NIH, were in fact very keen to assist Aaron in investigation this technique in ME/CFS ---- 'No good deed goes unpunished'
 
Hi I happened to be replying to a message from @Ron and thought I might post part of the reply here:
"I certainly think the technology is interesting but I think there may be challenges. E.g. if you look at one of Jonas Bergquist's old talks then you'll see that there are about 30,000 geneses, coding for proteins, and there are about 4 million proteins. The reason is that the "base" protein can be modified - "post-translational modification". These modifications are discussed in the paper. Yes the technique may help to identify autoimmune forms of ME/CFS - it looks like it has real promise for any autoimmune disease."

Thanks Ron.
 
You must log in or register to reply here.
Back
Top Bottom