It's cost/benefit, I suppose, and each of us will have different factors playing into that. There are people in the UK who go public - it's just that my personal choice is not to do so and I can understand why the IiME supporters doing this project wouldn't. There is also a third issue that I didn't mention, and that is the threat to incapacity benefit. I don't find it unlikely that if people doing such projects gave their names, the DWP might judge them as being fit for work and stop their disability benefits.
There are certainly valid reasons for people not to give out their identities on the Internet, however when one is endorsing an activity, particularly one where donations are being sought, it is important that the public has confidence in the validity of the endorsement. The way this project is being promoted seems unnecessarily coy; IiME clearly accepts responsibility for the project, as it makes clear in its most recent
Charity Commission return so I dont understand why there is any need for anonymous endorsement, something which only serves to confuse the situation.
I do think there are some problems with the proposal though. The most obvious difficulty arises from the stated involvement of the PCT (Primary Care Trust), the present Government is intent upon the abolition of PCTs in England and replacing them with
GP based commissioning ; this is not a simple governance issue but impacts upon
control of buildings and equipment . The Governments plans are in flux, having been attacked by a wide range of health interests, but the Governments position is that it intends to forge ahead, and realistically any plan for an M.E centre of excellence ought to address likely re-organisation scenarios.
Other problems arise from doubts about future funding of the NHS in England and in the UK in general, not only are there heavy downward pressures on income, while costs remain unrestrained, the commissioning regime envisaged by the Government may render any notion of a National Centre unachievable. Lower costs are achieved through long term contracts, which are for practical reasons of patient transport, preferentially set up on a parochial basis. This is something familiar to M.E/CFS suffers, many of whom have sought NHS treatment at particular centres, only to have funding refused because it is out of area and an alternative is available. GP commissioning has been presented as offering an end to out of area rationing however the new system may actually make the position worse, as the GP will be directly under financial pressure and therefore not even willing to make an out of area referral, let alone go so far as to raise a budget for any out of area/out of contract assessment/treatment. So even though a Centre could be created in East Anglia, it may not even be able to attract commissioning support from outside the commissioning area within which it operates, let alone distant parts of England, and even less likely N.I, Scotland or Wales.
A couple of lesser points also need to be addressed. IiME is a well established Charity, however it has no history of funding a large capital project, 100k is double IiMEs most recent annual account total so one would hope to see a very clear cost breakdown for the Centre project. A figure rounded to tens or hundreds of thousands is always somewhat suspect because it looks like a figure grabbed out of the air it may not be the case with the proposed Centre, but some justification of why it will cost 100k and not for example 50k or 500k needs to be given if potential donors are to have confidence in the project.
IVI