Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

[Forebearance]

I think Dr. Davis said that SS-31 is supposed to have no side effects. But he thought it might be expensive.

I appreciate your perspective, Alvin2. I don't know anything about scientific research, and to me it seems incredibly slow! Dr. Davis was talking about the same things he is going to do with the nanoneedle as he said last year. Sigh. The only difference I saw was that now they have tested a few drugs on blood cells using it.

And Dr. Naviaux!!! What is up with waiting years to do a follow-up study of a very promising result with Suramin??? Why has it taken so long?

I know I'm old and jaded, but watching research conferences makes me feel like a hope addict, and the researchers are like hope dealers.

 

[Alvin2]

I know, i want the nanoeedle to get a lot more done but from Moreau to Davis to Hansen they told us quite a few new things we did not know last year.

If i had millions to give them the nanoneedle is one that needs way more work now, i actually submitted a couple questions about it that did not get answered.

 

[Cam Newton]

Haven't got to listen to/watch the talks yet - hoping they will be available soon i.e. via OMF. In one of his previous talks Ron Davis highlighted that the nano-needle was 100% accurate - problem is how do you know someone has ME? Ron was testing patients experience ME doctors were convinced had ME - you can see the problem though i.e. you don't have a diagnostic test that tells you they have ME - just a doctors assessment. So 69 out of 70 may be pretty good at this stage!

Possibly all of the above is wrong --- haven't listened to/watched the talk.

Yeah, I agree with your point. Anyway, hopefully we get a Christmas update from Ron again. I assume they’ll have another few dozen patients tested for any damaging mutations.

 

[FMMM1]

@Alvin2 I do a little lobbying for ME Action. I was interested is Maureen's reference to "set aside funding" i.e. funding specifically allocated to ME research; that would address the shortfall in funding -- 2 million people + disease burden (comparable to MS) --- the current funding is much lower that the disease burden and equitable funding require.

This also comes up in the EU - Lyme received 33.9 million Euros (roughly dollars) in the last 10 years -- ME got zero. Partly this was due to specific research calls (EU equivalent of "set aside funding") for the development of a diagnostic tests and treatments (vaccine) for Lyme i.e. not the quality of applications for Lyme being better. @JaimeS may be able to provide some further ideas - apologies in advance - e.g. treating ME applications fairly by making some allowance for the fact that we are looking at a new disease, not a disease like MS which has a larger evidence base. Check out Vicky Whittemore's comments at the Invest in ME Conference [http://www.investinme.org/IIMEC14.shtml - 16.25 to 17.10 minutes). - regarding how this could be addressed.

Flooding the system with applications wont work unless they are excellent applications -- only the top 14% get funded; so flooding the system with applications which are mostly below 86% gets very little extra return.

Here's an EU petition those in the EU can support: EU-Petition 0204/2019

If anyone has a contact who has experience/knowledge of the EU system then I'm interested.

Dr Vicky Whittemore (NIH) at Invest in ME Conference (2019):
"advocacy groups --- that's what makes the difference -
- when they [elected representatives] hear that, from people with the disease -
- advocates -- telling them [elected representatives] what's needed is really what makes the difference"

 

[Alvin2]

Flooding the system with applications wont work unless they are excellent applications -- only the top 14% get funded; so flooding the system with applications which are mostly below 86% gets very little extra return.

It really depends on whether 14% is because they are going by a percentage system or a funding cap and 14% happens to hit that cap. If its a percentage system then yes it would help immensely. I am reminded of this clip (in reverse).

If it is a funding cap then it won't work at all.

 

[Aroa]

I was impressed with how much has been learned since last year.

I honestly had the opposite perception

 

[Alvin2]

I honestly had the opposite perception

To each their own

 

[FMMM1]

It really depends on whether 14% is because they are going by a percentage system or a funding cap and 14% happens to hit that cap. If its a percentage system then yes it would help immensely. I am reminded of this clip (in reverse).

If it is a funding cap then it won't work at all.

Yes it's a funding cap -- but thanks for the lighter moments! If you get some political willingness to fund ME then that would help to get more projects funded -- contact your elected representative as per Vicky Whittemore's advice.

 

[Alvin2]

Yes it's a funding cap -- but thanks for the lighter moments! If you get some political willingness to fund ME then that would help to get more projects funded -- contact your elected representative as per Vicky Whittemore's advice.

I figure it is as well but i would not object to adding many more applications and watching the percentage drop, they keep attacking us with this talking point, we should fight back and hang them with their own words. Plus once we get more money we have the submissions to be funded.
However there is a huge opportunity cost to sending in applications that disappear into the abyss, if there was not time and human resource cost to submitting applications it should be done.

 

[FMMM1]

I figure it is as well but i would not object to adding many more applications and watching the percentage drop, they keep attacking us with this talking point, we should fight back and hang them with their own words. Plus once we get more money we have the submissions to be funded.
However there is a huge opportunity cost to sending in applications that disappear into the abyss, if there was not time and human resource cost to submitting applications it should be done.

The recently adopted NIH report on ME looks promising*. So there appear to be steps taken to improve funding for ME research in the US. The EU (Commission) has some catching up to do - zero funding for ME research and no plans to change system!

*

https://www.ninds.nih.gov/sites/default/files/report_of_nands_council_working_group_for_mecfs_research_508c.pdf

 

[FMMM1]

I was impressed with how much has been learned since last year. I know a great deal about research in the Parkinsons disease world and with far more money and so many more researchers in the field they don't approximate this level of discovery so quickly. Alzheimers same story.
Obviously we want the disease mechanism and a drug target yesterday but this is very impressive.
Maureen Hansen explained things incredibly well and i would use that as an informational tool when the history of ME research is written to to give to anyone who wants to know why we are still at a 1970s level of commitment to ME research.

It really comes down to funds here, if this can be done on a shoestring budget then money will help immensely.
I always wondered what that percentage was and now that we know i wonder if flooding them with applications would help, would they maintain that percentage or is it a funding cap? If they will keep 14% then lets put in 5x the applications, resubmit rejected ones, come up with new ones, submit multiple per researcher. Play their own game against them. Not easily done but if the researchers are willing i'd be happy to talk about this.

Can anyone advise where we are with the nano-needle @Ben H ?

I think I picked up that OMF would fund the work on the nano-needle then I picked up that OMF had submitted an application for funding to NIH - can anyone advise i.e. did OMF submit an application (re nano-needle)?

The nano-needle is looking like a leading contender for a diagnostic test at this stage so it would be good to know what's happening.

 

[wigglethemouse]

I think I picked up that OMF would fund the work on the nano-needle then I picked up that OMF had submitted an application for funding to NIH - can anyone advise i.e. did OMF submit an application (re nano-needle)?

The nano-needle is looking like a leading contender for a diagnostic test at this stage so it would be good to know what's happening.

@FMMM1 this was the last update I saw

https://twitter.com/i/web/status/1138249920555544577

 

[Alvin2]

The recently adopted NIH report on ME looks promising*. So there appear to be steps taken to improve funding for ME research in the US. The EU (Commission) has some catching up to do - zero funding for ME research and no plans to change system!

*

https://www.ninds.nih.gov/sites/default/files/report_of_nands_council_working_group_for_mecfs_research_508c.pdf

Thanks for the link but i can't read 59 pages
Whats the coles notes version, are they allocating more money for 2019 and beyond?

 

[FMMM1]

@FMMM1 this was the last update I saw

https://twitter.com/i/web/status/1138249920555544577

Thanks @wigglethemouse - bit worried that waiting for NIH funding might delay progressing the nano-needle work. However, I suppose they have to make the most of funding opportunities.

 

[FMMM1]

Thanks for the link but i can't read 59 pages
Whats the coles notes version, are they allocating more money for 2019 and beyond?

Couldn't access report earlier. Basically I see it as good news they have identified problems e.g. most money goes to a few researchers -- they need to broaden the base (e.g. Bupresh Prusty?) and many of these researchers are nearing the end of their careers -- focus on researchers entering field/switching from other things. There's also stuff (Whittemore's presentation at Invest in ME 2019?) re need to make allowance when scoring grant applications for ME versus other diseases (I think). So this highlights a change in thinking. Sorry - rushed reply.

 

[JES]

I think Dr. Davis said that SS-31 is supposed to have no side effects. But he thought it might be expensive.

I appreciate your perspective, Alvin2. I don't know anything about scientific research, and to me it seems incredibly slow! Dr. Davis was talking about the same things he is going to do with the nanoneedle as he said last year. Sigh. The only difference I saw was that now they have tested a few drugs on blood cells using it.

And Dr. Naviaux!!! What is up with waiting years to do a follow-up study of a very promising result with Suramin??? Why has it taken so long?

I know I'm old and jaded, but watching research conferences makes me feel like a hope addict, and the researchers are like hope dealers.

There was an issue with Bayer not willing to provide suramin to Naviaux, so he had to find a new manufacturer and it looks like trials will not begin until mid 2020 (source). I was a bit surprised though to not hear anything about suramin mentioned in the latest symposium. The price of suramin would make it more reasonable than either copaxone or SS-31, which cost thousands of dollars per month.

 

[Aroa]

Couldn't access report earlier. Basically I see it as good news they have identified problems e.g. most money goes to a few researchers -- they need to broaden the base (e.g. Bupresh Prusty?) and many of these researchers are nearing the end of their careers -- focus on researchers entering field/switching from other things.

It is worrying that a new Researcher like Prusty feels that Labs that right now concentrate ME Research may not facilitate them entering the field.

 

[Rufous McKinney]

Can anyone clarify the red blood cell deformity issue? Wasn't there a recent presentation in which this was not confirmed?

 

[FMMM1]

It is worrying that a new Researcher like Prusty feels that Labs that right now concentrate ME Research may not facilitate them entering the field.

Yea if I understand it correctly NIH are keen to get younger researchers and researchers crossing over from related research areas - yes like Bhupesh Prusty. The difficulty is funding. I've been volunteering with ME Action; lobbying for funding from the EU Commission - Horizon Europe/Horizon 2020. It looks like NIH is focusing on improving things regarding ME research - well done to Vicky Whittemore (and others!). Hopefully others will follow NIH 's example e.g. the EU Commission. Also, organisations like Solve, who funded Bhupesh, have been a source of limited funding - well done to them.

Vicky* highlighted role of patient advocates -- contact your elected representative.

*Invest in ME Conference 2019

 

[Alvin2]

Couldn't access report earlier. Basically I see it as good news they have identified problems e.g. most money goes to a few researchers -- they need to broaden the base (e.g. Bupresh Prusty?) and many of these researchers are nearing the end of their careers -- focus on researchers entering field/switching from other things. There's also stuff (Whittemore's presentation at Invest in ME 2019?) re need to make allowance when scoring grant applications for ME versus other diseases (I think). So this highlights a change in thinking. Sorry - rushed reply.

Vicky* highlighted role of patient advocates -- contact your elected representative.

I think its a form of stalling. They present good ideas as excuses for not doing anything now. Divide and conquer or split the baby.
They have been using this excuse for a long time, in their request for submissions earlier this year i explained that this is silly, they are saying you need the chicken before the egg, if you want young researchers who have no reason to come into a dead field then you won't get them because they are saying we won't fund the incumbent players who could impart their experience and knowledge to the next generation plus with no funding now it does not look like there will be funding for anyone later. Empty promises don't pay the bills when they have been employing them for years.
A fake Mexican standoff