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

[Jonathan Edwards]

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.

Nice try Barry, but to be fair awards of grants are not news. Results are news. When did you ever read about an award of a grant in a paper, or hear it on TV?

The only significance of Charles's note to SMC to my mind is that I had a slight urge to ring up the RSPCA - cruelty to dumb.... and all that, you know.

 

[Barry53]

Nice try Barry, but to be fair awards of grants are not news. Results are news. When did you ever read about an award of a grant in a paper, or hear it on TV?

Fair enough . But is it that common for a UK research organisation to be funded, to the tune of $2.1M, by an American government institution? (Genuine question, I'm very naive on this sort of thing).

 

[suffolkres]

Nice try Barry, but to be fair awards of grants are not news. Results are news. When did you ever read about an award of a grant in a paper, or hear it on TV?

The only significance of Charles's note to SMC to my mind is that I had a slight urge to ring up the RSPCA - cruelty to dumb.... and all that, you know.

Please, please Jonathan, don't chose the RCPCA ! They are worse than the SMC- and they cost me lots when I took a Judicial Review (unsuccessfully) to try to prevent then despoiling out local habit and wildlife area last year....

 

[suffolkres]

The MEA contributing charities and LSHTM team have brought joy and hope, even as far as Sunny Suffolk and Norfolk. I have been on the case and have contacted Communications Manager | CRN: Eastern | NIHR Clinical Research Network (CRN) and Norfolk Community Health and Care NHS Trust, who both have supported the work of the LSHTM 2013-2015. I advised them of the award in the hope that their interest will be sustained and that they can influence the recalcitrant local CCGS.......

 

[Esther12]

Nice try Barry, but to be fair awards of grants are not news. Results are news. When did you ever read about an award of a grant in a paper, or hear it on TV?

The only significance of Charles's note to SMC to my mind is that I had a slight urge to ring up the RSPCA - cruelty to dumb.... and all that, you know.

The decision to fund FITNET-NHS got plenty of coverage and hype via the SMC:

http://forums.phoenixrising.me/inde...one-more-anti-patient-prejudice-fitnet.47676/

 

[Hutan]

So what would the Aussie version be?

Singing a song about it at a very large sporting event maybe?

 

[Sean]

So what would the Aussie version be?

Let's just say it involves at least two goon bags, an echidna, and bodily orifices that not even your doctor wants to know about.

 

[simeyss]

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

Yes, the Melbourne Bioanalytics team has been running on a shoestring, as far as grant money is concerned. They've done some amazing work, and have some good studies in the pipeline too. Thank you for supporting them!

 

[Valentijn]

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.

They only seem particularly interested in promoting news from people whose institutions have funded them in the past. If we're lucky, we'll get some psychologists explaining why it's a dualist mistake to focus on the bio so much, and propose that a biopsychosocial bank is really what's needed

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.

You really need to read more of their research. The deliberate exploitation of poor methodology can yield whatever results Esther & Co want, as they have repeatedly proven over the years. And I'm sure they could think of dozens of ways to match up objective abnormalities with anxiety and depression subscales, or show one tiny component in the blood is normal and use it as a basis to claim that everything is normal and we're just crazy.

A press release has been sent to the SMC!

With no check attached? So cheeky!

So what would the Aussie version be?

Something involving a (relatively polite) crocodile, I expect

 

[charles shepherd]

The MEA contributing charities and LSHTM team have brought joy and hope, even as far as Sunny Suffolk and Norfolk. I have been on the case and have contacted Communications Manager | CRN: Eastern | NIHR Clinical Research Network (CRN) and Norfolk Community Health and Care NHS Trust, who both have supported the work of the LSHTM 2013-2015. I advised them of the award in the hope that their interest will be sustained and that they can influence the recalcitrant local CCGS.......

Thanks very much for doing that!

I will let the Biobank team know

Have you met Caroline? - our research nurse who lives in Cambridge and does the home visits to collect blood samples from people with severe ME/CFS

CS

 

[slysaint]

So what would the Aussie version be?

I can feel a four x coming on.........

 

[boolybooly]

You really need to read more of their research. The deliberate exploitation of poor methodology can yield whatever results Esther & Co want, as they have repeatedly proven over the years. And I'm sure they could think of dozens of ways to match up objective abnormalities with anxiety and depression subscales, or show one tiny component in the blood is normal and use it as a basis to claim that everything is normal and we're just crazy.

I know what you mean and I agree they are likely to try to exploit the biobank data for their own purposes. While they deserve to be held up to scrutiny and criticism to expose their blags IMHO their incorrigible parasitism of the academic process is just something we will have to keep fighting until we can categorically prove our point. The path to eventual success is pressing ahead with empirical science and this will happen much quicker with a biobank than without one.

With a biobank everyone has access to the same data and so the BPS lobby cannot strike a pose in a secret garden as they tried to with the PACE trial data. Also they will not be able to groom their victims to give them the results they want as is intrinsic to something like the Lightening Process and will not be able to conduct any potentially harmful CBT or GET type trials as all they have is the tissue and the patient data to work with.

So I feel that the biobank will help us take the initiative and give serious empiricists an advantage over pseudoscience panto. Though thinking out loud I would remark that finding truth from these samples hinges critically on the quality of the diagnosis behind the samples submitted to the biobank in the first place. That imho is the potential Achilles heel of the project and demonstrating the viability of that process would go a long way to generating confidence among patients.

 

[Valentijn]

With a biobank everyone has access to the same data and so the BPS lobby cannot strike a pose in a secret garden as they tried to with the PACE trial data.

Nonetheless, they would use that access to produce junk research, spin the results, pollute the evidence base, and prejudice government institutions and the public against ME and ME patients. They should not be getting funded, nor having any other resources wasted on them.

 

[suffolkres]

Thanks very much for doing that!

I will let the Biobank team know

Have you met Caroline? - our research nurse who lives in Cambridge and does the home visits to collect blood samples from people with severe ME/CFS

CS

Yes, Charles, we have had formal meetings with the LSHTM team during 2016 with associated Suffolk and Norfolk CCG Commissioners, as part of our protracted and long term "co-production of services" 12 years of work and to drive a new Service Specification which was signed off in 2013.....(before the Cameron 2010 "no change to the NHS" changed the NHS ) This spec specified a reinstatement of a consultant led service, (after it was varied without due process in 2005). It was to specifically to address the deficit of service for the Severely Affected.

LSHTM had completed a Feasibility Study which they undertook for 6 out of the 7 CCGS - Gt Yarmouth & Waveney wouldn’t agree to join and contribute to it which meant it had to be curtailed…….(Don't ask!!)

The Feasibility Report -Feasibility assessment of the Implementation of a ME & CFS Consultant-led Service for Norfolk and Suffolk Report to 6 CCGs in Suffolk and Norfolk November 2016 Luis Nacu, Eliana Lacerda, Caroline Kingdom -explored whether the specified development could be be achieved on a cost neutral basis.
The Report was made public by Norfolk Joint Scrutiny and Overview in April 2017 and can be accessed on the Norfolk CC website.

Following the release of the Feasibility Study - It was made public in April 2017 (see link to study) pages 37-74 of the Joint HOSC Report April 2017 http://norfolkcc.cmis.uk.com/norfolkcc/Meetings/tabid/70/ctl/ViewMeetingPublic/mid/397/Meeting/580/Committee/25/Default.aspx

Please note, Joint HOSC and local Councillors have had this issue on their agenda for 10 years and have been very supportive to us!

Caroline has met the BIOBANK project ME and normals! recruits as well in Norfolk and Suffolk.

 

[Vonjones]

I am sure I saw somewhere the total millions granted in uk so far to psych research and the paltry total granted to biomed research - was trying to remember when telling friend about this US grant.
Anyone got the figures?

 

[lilpink]

Though thinking out loud I would remark that finding truth from these samples hinges critically on the quality of the diagnosis behind the samples submitted to the biobank in the first place. That imho is the potential Achilles heel of the project and demonstrating the viability of that process would go a long way to generating confidence among patients.

This would seem to be a good time for patients and advocates and charity reps to politely ask the Nacul team to tag ICC onto their criteria for cohort selection. I appreciate the cohort has already been chosen using the various criteria mentioned elsewhere, but surely it would possible to re-assess each participant using ICC and input this data digitally and thus help to make sure that analyses reflect the best diagnostic tools as well as the frankly useless (think 'Fukuda'). Surely it would be possible to use the database to extrapolate the usefulness of these various criteria in terms of the resulting biomedical information the project generates?

 

[suffolkres]

Good idea and FYI, Suffolk Commissioning have stated that they use ICC not NICE....

 

[AndyPR]

Have now diverted a regular donation I was making elsewhere, it will now be going towards supporting the Biobank. Here is the donation link http://cureme.lshtm.ac.uk/donate-to-cureme/

 

[Hutan]

Here is the donation link http://cureme.lshtm.ac.uk/donate-to-cureme/

I just tried to make a donation. The donation page is very insistent about entering an address and it has to be a UK address. I'll try again later with the address of the MEA or something. But the Biobank might like to see if they can make donations from overseas a bit more straightforward.

 

[charles shepherd]

I just tried to make a donation. The donation page is very insistent about entering an address and it has to be a UK address. I'll try again later with the address of the MEA or something. But the Biobank might like to see if they can make donations from overseas a bit more straightforward.

I have just passed this comment to the Biobank team!

CS