ME/CFS NIH public outreach session in London, 8 Sept 2014

[Sasha]

Includes Q&A

http://www.lshtm.ac.uk/newsevents/events/2014/09/mecfs-nih-public-outreach-session

Date: Monday 8 September 2014
Time: 6:30 pm - 7:30 pm
Venue: Manson Lecture Theatre, LSHTM, Keppel Street, London, WC1E 7HT, UK
Type of event: Seminar



We are pleased to announce that Dr. Christopher Beisel from the U.S. National Institutes of Health (NIH) will be holding a discussion on the role of the NIH in funding ME/CFS research Monday, Sept. 8th at the London School of Hygiene & Tropical Medicine (LSHTM).

The event will be held from 6:30 to 7:30 PM in the Manson Lecture Theatre at LSHTM. Doors open at 6:00 PM.

The lecture hall is near the main entrance of the Keppel Street LSHTM building, which is in central London, close to the British Museum. Step-free access is available and the venue is fully wheelchair accessible.

Click here for a map and directions (we'll be in building #1).

The event is open to the public and all are welcome!

The evening is aimed at ME/CFS patients, their carers and loved ones, and other interested parties, and will be informal to allow an open, casual, and productive dialogue.

Dr. Beisel will give a brief presentation and will then open up the floor to questions.

This will be an exciting and rare opportunity to hear about:

• the NIH's structure, funding, and relationship with the US federal government,
• the ME/CFS research project the NIH is currently funding at LSHTM,
• the portfolio of ME/CFS studies the U.S. government is currently funding,
• how the NIH determines who will receive funds, and
• specific requirements for foreign grantees.

Please note, Dr. Beisel is neither a medical doctor nor an ME/CFS specialist, and unfortunately is not in a position to:

• answer questions related to symptoms individuals may be experiencing, or
• provide feedback on etiological hypotheses.

Additionally, staff members of the CURE-ME ME/CFS research team will be on hand to answer questions about their NIH-funded research and development of the UK ME/CFS Biobank.

It is not required to RSVP and entrance will be on a first-come first-served basis.

However, if you plan to attend it would be very helpful for planning purposes if you could please send an email to mecfsbiobank@LSHTM.ac.uk with the subject line "NIH outreach session" stating how many will be in your party and whether step-free or wheelchair access will be required.

Dr. Beisel is a Team Leader for Grant Policy and Activities and Program Officer for Beta and Gamma Herpesviruses and Prions in the Virology Division, Division of Microbiology and Infectious Diseases (DMID) at the National Institute of Allergy and Infectious Diseases (NIAID) at NIH. He completed his PhD at the University of Chicago, completing his thesis on Epstein-Barr virus glycoproteins. He joined NIAID in 1992 as a Scientific Review Officer and transitioned to Program Officer in 1996. His current responsibilities include overseeing and managing awarded grants and contracts, identifying scientific gaps and priorities, and outreach to scientific community and the public.





Admission: All welcome, please rsvp to email below

Email:mecfsbiobank@LSHTM.ac.uk

 

[Sasha]

More detail on the NIH £1m grant to LSHTM: http://t.co/HnimU0AxjK

 

[Sasha]

The MEA are fundraising for the biobank, of course:

http://www.meassociation.org.uk/201...biobank-could-you-be-a-sponsor-of-our-appeal/

 

[Kati]

It's interesting to me that they are doing outreach work for ME in the UK when there is a budget of merely 6millions for research. Perhaps there was a need for holiday expenses and London in Speptember sounded pretty good?
(Sorry, i'm sarcastic)

 

[Sasha]

It's interesting to me that they are doing outreach work for ME in the UK when there is a budget of merely 6millions for research. Perhaps there was a need for holiday expenses and London in Speptember sounded pretty good?
(Sorry, i'm sarcastic)

Let's hope he was already here!

 

[Ren]

Can anyone record Beisel's session?

 

[Sasha]

Can anyone record Beisel's session?

There's an email address given. Why not email and ask them if they can record it themselves? I'm sure it would be of general interest. I think anyone recording it would need their permission anyway.

 

[Anne]

Is anyone able to be there and ask some tough questions about the level of funding allocated for ME/CFS, the problematic review panels for ME/CFS, etc? Ask the NIH representative if it is reasonable that a researcher like Lipkin (lauded by the very NIH at the time of the XMRV studies as one of the world's leading researchers in his area) gets his applications denied when turning to NIH with ME/CFS projects?

 

[Kati]

Is anyone able to be there and ask some tough questions about the level of funding allocated for ME/CFS, the problematic review panels for ME/CFS, etc? Ask the NIH representative if it is reasonable that a researcher like Lipkin (lauded by the very NIH at the time of the XMRV studies as one of the world's leading researchers in his area) gets his applications denied when turning to NIH with ME/CFS projects?

What @Anne said, this is a great question

 

[Ren]

There's an email address given. Why not email and ask them if they can record it themselves? I'm sure it would be of general interest. I think anyone recording it would need their permission anyway.

If others are interested, perhaps you (i.e. those interested others) might email as well?

The advertisement makes note of wheel-chair access. This is a tool which helps people access a public space.

Many - perhaps most - people with ME/CFS, however, lack the physical (including cognitive) strength and (most-likely) financial means to access a real-time, public discussion in London. For such stakeholders, audio/visual/digital apparatus are the tools which allow access to the public space.

Please ask the discussion coordinators to give ME stakeholders equal access (through technology) to the public sphere. (Many thanks!)
mecfsbiobank@LSHTM.ac.uk

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EDIT: I received a very polite and prompt email response from the address Sasha shared (thank you!), and they said that a power point presentation will be made publicly available (but no info as to how or when).

They also said the event will not be filmed and permission for it to be filmed cannot be given. (I don't understand how that can be legal. Is it normal to have to ask permission to film public employees doing public work in a public space, in the UK? :/)

 

[Ren]

Fyi, UK coordinators for the NIH seminar have ignored emails asking for a legal explanation of why recording was not permitted were unsure of legal issues and were too overwhelmed / understaffed to arrange audio/audio-visual access.

By comparison, NIH's upcoming P2P workshop in the US is open to the public and will be live-televised with an archived version available free online worldwide within a week.