Trial By Error: NIH Grants $2.1 Million to UK Biobank!

By David Tuller, DrPH

The National Institutes of Health is making a $2.1 million grant to the UK ME/CFS Biobank–a huge endorsement of this important project run by CureME and housed at the London School of Hygiene and Tropical Medicine. Here’s what the ME Association wrote on its website:

The funding represents the biggest ever single investment in biomedical research to happen in the UK and it will enable a current project, that is searching for disease biomarkers, to be extended for another 4 years – until 2021.

The project is a longitudinal study that is measuring changes in the immune system and genetic profile of individuals in a disease whose symptoms are known to fluctuate over time. The initial £1 million project, which began in 2013, was over 3 years and had also been made possible by funding from NIH.

The announcement comes a few weeks after the annual conference of the CFS/ME Research Collaborative, which has backed a parallel project called the ME/CFS Epidemiology and Genomics Alliance (MEGA). At the CMRC gathering, the organization’s chair, Professor Stephen Holgate, extolled his colleague, Professor Esther Crawley, for her amazing and stunning work on MEGA–even as he announced that the project had failed its recent bid for funding from the Medical Research Council.

The MRC rejection followed Wellcome Trust’s rejection of an earlier MEGA application. But this second decision was particularly surprising, given that Professor Holgate himself has longstanding ties with the MRC. An MRC representative also sat on the CMRC’s executive committee. That the agency chose not to fund MEGA was clearly an unwelcome public embarrassment for the CMRC, Professor Holgate and Professor Crawley.

In his remarks, Professor Holgate tried to mitigate the negative impact by promising that MEGA would regroup, learn from the MRC’s comments, and pursue other funding opportunities. In particular, he highlighted the organization’s upcoming meeting with Vicky* [corrected from Vicki] Whittemore of the NIH as an exciting opportunity–raising the expectation that this event might lead to positive developments for the CMRC and its pet project.

Vicky* [corrected from Vicki] Whittemore has taken a great interest in what this collaborative is doing, and wants to talk to us about how we can…form collaborative initiatives between the National Institutes of Health and the researchers here in UK, Professor Holgate noted in his remarks. What shape that might look like and where it goes I don’t know because we haven’t had the conversation yet, but the mere fact that she’s giving up a whole morning to meet with us…is incredibly encouraging, and we’ll let you know how it all goes.

Now we know how it all went. The NIH is funding the UK ME/CFS Biobank.

Earlier today, I sent the following e-mail to Professor Holgate (and other members of the CMRC executive committee), seeking comment on this exciting new funding development:

At your opening remarks at the CMRC conference, you mentioned that the group would be meeting soon with Vicki [sic] Whittemore of the National Institutes of Health. You called the prospect of having the meeting and exploring collaborative initiatives ‘incredibly encouraging.’ 

You presumably hoped, when you announced the upcoming meeting, that the NIH would take an interest in the CMRC and MEGA. Since MEGA’s grant applications to two major UK funders–the Wellcome Trust and the Medical Research Council–were both turned down, it makes sense to regroup and seek links with a large overseas funding agency like the NIH. 

Given that context, I wonder if you (or anyone on the executive committee) would like to comment on the announcement that the NIH is providing $2.1 million to the UK ME/CFS Biobank, at the London School of Hygiene and Tropical Medicine. That is obviously a huge investment in biomedical research and a major endorsement of the UK ME/CFS Biobank’s vision and leadership. So:

Why do you think the NIH chose to provide such substantial support to the UK ME/CFS Biobank? Are you surprised at the NIH decision, or did you learn about it in the meeting that took place after the CMRC conference? Has the NIH given any indication that it might offer CMRC and MEGA similar support in the future? 

And a few more questions: Given the CDC’s recent “dis-endorsement” of the CBT/GET treatment approach to ME/CFS, do you think NIH officials are likely aware of the international uproar over the conduct and findings of the PACE trial and related biopsychosocial research? Do you think US public health officials might be reluctant at this point to fund investigators who are firmly associated with the CBT/GET camp and who declare PACE to be a “great, great” trial? 

Furthermore, do you think US public health officials might be reluctant to fund investigators who believe patients seeking access to public information are “vexatious,” or who publicly advise other researchers how to avoid their obligations under British freedom of information laws? Do you think US public health officials might be reluctant to fund investigators who make false accusations of “libellous blogging,” and then refuse to either provide evidence for the charge or apologize? Do you think they might be reluctant to fund organizations that affirm “full support” for investigators who engage in such behavior? 

As before, I have not included Professor Crawley in this e-mail, since I am aware that she considers messages from me unwelcome. However, I would of course be pleased to post any comment from her about this issue. It goes without saying that I would also still welcome any explanation or documentation of her accusation of “libellous blogging.” So please feel free to forward this e-mail to her!

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