Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

[Rossy191276]

Ok thanks for that info Dr Shepherd...

Just for your information I am a former professional tennis player who after retiring built a successful online tennis consulting business before being struck down with severe ME ( have not been able to leave bed now for 6 months and can't speak...yes I am just another one of the many thousands of people whose lives have been destroyed by GET efforts during early disease stages..

I have a very well connected tennis community including former players who want to help and myself and my wife will be starting a charity where all proceeds will go to biomedical ME research..

We will be supporting the Melbourne bioanalytics group in Australia who are collaborating with the Ron Davis group...

My question is whether you and perhaps Jonathan Edwards think that an Australian ME biobank of the same setup in the U.K. would be a valuable endeavour to maybe join with the UK one...

 

[Rossy191276]

Ok thanks for that info Dr Shepherd...

Just for your information I am a former professional tennis player who after retiring built a successful online tennis consulting business before being struck down with severe ME ( have not been able to leave bed now for 6 months and can't speak...yes I am just another one of the many thousands of people whose lives have been destroyed by GET efforts during early disease stages..

I have a very well connected tennis community including former players who want to help and myself and my wife will be starting a charity where all proceeds will go to biomedical ME research..

We will be supporting the Melbourne bioanalytics group in Australia who are collaborating with the Ron Davis group...

My question is whether you and perhaps Jonathan Edwards think that an Australian ME biobank of the same setup in the U.K. would be a valuable endeavour to maybe join with the UK one...

Dr Edwards i wrote this before seeing your reply...

 

[Barry53]

I am just another one of the many thousands of people whose lives have been destroyed by GET efforts during early disease stages

I would love to see genuine research undertaken to properly quantify the ratio of PwME supposedly cured by GET, versus those in harmed by it. The BPS brigade always trot out this cr@p about their naff RCTs showing no ill effects (I'm sure their methodologies obfuscate this), and use it to justify destroying the lives of so many people ... yet dispute they have cause any harm.

I think it time someone actually researched this formally, so evidence for being harmed by GET is no longer anecdotal, but truly solid research findings; this would shut so many people up who just need to zip it. There are so many people, here in PR alone, who recount the same a @Rossy191276 here - that GET actually messed their lives up.

 

[anni66]

Fantastic news. Yaay NIH! And the Biobank team!





Yes

One advantage of the poor performance by sterling - this is worth a bit more

 

[boolybooly]

I am not aware of having urged people to donate to any particular project in the past and I do not really expect to do so for other projects in the future but I want to make an exception for this one. It is a resource for everyone.

The $2.1M is fantastic. But it is for specific research projects. The Biobank has to have a budget for infrastructure and strangely that has proved more difficult to cover than the actual research. It is strange because the amount needed is really quite small. My understanding is that about £75,000 a year is needed to keep the inflow of samples coming in order to guarantee long term viability.

Wellcome did not come up with money this year but I think the renewed NIH grant, together with ongoing research, may help a more favourable response next time around. Nothing succeeds like success, as they say. There may also be ways of underwriting at least some of the infrastructure costs. This is the sort of money that small charitable bursaries can sometimes be found to cover too.

On the other hand it seems to me that this is something that members of PR could take real pride in making happen. Even a third of the money needed would be a huge help. What I think would be particularly helpful would be for people to commit themselves to a small sum on a rolling annual basis - because it is a rolling annual basis that is needed. In a year or so someone like Wellcome may pick up the tab but money is not going to go to waste.

I think people may not realise just how impressive the achievement of the LSHTM team is - chiefly the hard work of Luis Nacul, Eliana Lacerda and Caroline Kingdom. Amazingly, the ME Biobank seems to be the largest disease specific Biobank in the entire UCL/RFH facility. This is state of the art biobanking. The cohort of patients is based on community sourcing so is as close to a population based cohort as is likely to be feasible. If samples are used by researchers to replicate testing of any particular hypothesis this has the huge advantage that the samples have been collected in a way that will have no bias relating to that particular hypothesis. Good sample collection is often the most time consuming part of research. Now researchers have samples ready and waiting.

I could not actually see the news on the CureME website yet but it should be up there today. If people want to indicate their appreciation of hard work on their behalf what could be better than going to the website and signing up for a small (or large!) donation on an annual basis? I think the set up is already there. And if one or two charities can chip in I see no reason why the Biobank should not have infrastructure assured by Christmas. Then the international research community will have the resource base it needs.

Thanks for explaining about the funding structure I did not realise that. It sounds like we still have a job to do to make sure we keep the biobank afloat until the snowball rolls under its own steam, if you will pardon the mixed metaphor !

CureME donate page.
http://cureme.lshtm.ac.uk/donate-to-cureme/

It makes sense, we need this as a foundation for empirical science and the reason I am not afraid of Crawley &Co is that you can only do empirical molecular science with a tissue sample, there can be no linguistically programmed self reporting or recovery criteria fudge.

The only place where it gets a little hazy from an experimental perspective is criteria used to diagnose a tissue contributor and submit a sample, since the collection is bound to be a mixed bag, but my optimistic hope is that when the sample sizes are large enough, the biomarker patterns of different subtypes will be self evident through molecular analysis, we just need to be asking the right questions.

 

[Jonathan Edwards]

My question is whether you and perhaps Jonathan Edwards think that an Australian ME biobank of the same setup in the U.K. would be a valuable endeavour to maybe join with the UK one...

An Australian Biobank would be an excellent idea. It requires funds to maintain though. I would favour trying to get the UK set up solidly established and then try to set up partner banks as research expands.

 

[Jonathan Edwards]

The only place where it gets a little hazy from an experimental perspective is criteria used to diagnose a tissue contributor and submit a sample, since the collection is bound to be a mixed bag, but my optimistic hope is that when the sample sizes are large enough, the biomarker patterns of different subtypes will be self evident through molecular analysis, we just need to be asking the right questions.

The advantage of the Biobank set up is that they have clinical data recorded so that you can categorise by whatever criteria you like. And the collection is not biased by going through a neurology clinic or rheumatology clinic or even a psychiatry clinic.

I tend to agree with Ron Davis that for biomarkers that are truly useful you probably do not need huge numbers of patients. You do for genetics but that is only one aspect.

 

[Rossy191276]

An Australian Biobank would be an excellent idea. It requires funds to maintain though. I would favour trying to get the UK set up solidly established and then try to set up partner banks as research expands.

Ok cheers for the advice

 

[charles shepherd]

Be interesting to see if the SMC manage to report this at all, and if so what kind of spin there might be on it. Not exactly insignificant news is it, important UK research being funded by an American government institution ... everyone should be over the moon you might imagine. Can the SMC actually afford not to report this, if they are to retain any sort of credibility amongst the wider scientific community at all? Especially as cracks seem to be appearing in the SMCs facade/charade of impecable investigative scientific journalism .

A press release has been sent to the SMC!

CS

 

[user9876]

The advantage of the Biobank set up is that they have clinical data recorded so that you can categorise by whatever criteria you like. And the collection is not biased by going through a neurology clinic or rheumatology clinic or even a psychiatry clinic.

I tend to agree with Ron Davis that for biomarkers that are truly useful you probably do not need huge numbers of patients. You do for genetics but that is only one aspect.

I think one of the interesting things about this latest work is the longitudinal study and taking samples from the same patients over time (If I have understood correctly). Hopefully this will give a view on what just changes, what seems to change with severity/symptoms and what may be consistent. Comparing samples from the same person over time may help deal with lots of the issues associated with needing large control populations.

 

[greeneagledown]

@Jonathan Edwards @charles shepherd do you know if this team has any promising leads, since my understanding is that this grant is merely to continue research they've already been doing?

 

[greeneagledown]

also @charles shepherd I suspect more people will see this if it got moved to "General ME/CFS News." Or maybe a thread could be posted there linking to this.

 

[lilpink]

We will be supporting the Melbourne bioanalytics group in Australia who are collaborating with the Ron Davis group...

Sounds like a plan. Are you also aware of the work of Sonya Marshall-Gradisnik and Don Staines .... they are doing some very interesting work with TRPM 3 such as: https://app.secure.griffith.edu.au/...ome-cell-discovery-may-hold-key-to-treatment/

 

[Gijs]

I would like to see more research on the autonomic nervous system and spinal fluid. I don't think the answer is in the blood. They keep looking and looking at the wrong place!

 

[Jenny TipsforME]

The $2.1M is fantastic. But it is for specific research projects. The Biobank has to have a budget for infrastructure and strangely that has proved more difficult to cover than the actual research. It is strange because the amount needed is really quite small. My understanding is that about £75,000 a year is needed to keep the inflow of samples coming in order to guarantee long term viability.

Having worked for charities I know it’s really hard to fundraise for infrastructure. It’s not sexy and people don’t feel quite the same feel good glow. Big funders don’t get the same measurable results so they don’t like it either. It is important though and an organisation can’t run without it. This would be an excellent target for patient donations (for people not on the bread line due to ME anyway).

 

[MeSci]

CureME donate page.
http://cureme.lshtm.ac.uk/donate-to-cureme/

Have set up an annual small donation. May increase it if things improve (financially).

 

[Rossy191276]

Sounds like a plan. Are you also aware of the work of Sonya Marshall-Gradisnik and Don Staines .... they are doing some very interesting work with TRPM 3 such as: https://app.secure.griffith.edu.au/...ome-cell-discovery-may-hold-key-to-treatment/

Hi lilpink yes I haven't followed their work terribly closely other than seeing quite a bit of criticism of some of the claims they have made considering the preliminary nature of their work and small sample sizes..But my understanding is that they have several million in grants whereas the Melbourne group have been doing some amazing studies unpaid... itd be great to be able to give both groups all resources they need... hopefully Aus government will start doing their job at some stage too

 

[Sean]

A press release has been sent to the SMC!

CS

The polite English way of making trouble.

 

[user9876]

The polite English way of making trouble.

So what would the Aussie version be?

 

[Barry53]

The ME/CFS Biobank research grant was big news today in the science world, as indeed were two other stories, which by my reckoning (quick finger tally) makes three all told. Spot which once the SMC seem to have overlooked. Maybe they somehow missed CS's email . If they really don't report this, and do it objectively, then surely that will be such an own goal for them.