! Fukuda, ICC and CCC are though right?
?
I've only been diagnosed medically with SEID ME/CFS, so I'm not 100% sure about the others. But a patient can be diagnosed with SEID even if they have other fatiguing conditions.Ah sorry! I did not know this. Thanks for clearing it up
IOM report said:
I queried mito disease with paediatrician. I got a very weird look and was told that it only applied to very all children (!)
This was basically the response I had from a doctor when I brought it up, awareness seems limited to very significant congenital disorders.
Invest in ME Research Charity It would be ironic if others took all that IiMER and its supporters have started and made it their own - retaining influence, serving different interests, and staying in a position of power.
Ironic if some consortium or some collaborative sought lots of support for its own make-over and reached an agreement with another group to create its own centre, perhaps including a large, mega project of some sort as part of a planned bid for funding.
Ironic if the MRC then put out a call for a centre of excellence for all to apply, yet set up purely to satisfy a predetermined bid from said consortium/collaborative.
Ironic if that consortium/collaborative, now having received MRC funds and recognised as a “centre”, were to attempt to align and join with the NIH centres recently funded.
Ironic if this were all announced at an upcoming conference with the main protagonists presenting.
A nice coincidence if all of this followed some sort of parliamentary event about ME - and then there would be the perfect news story.
Imagine this –
- a parliamentary debate on ME which calls for more research
- the government “listens”
- the MRC steps up to answer the call for more research (now
using the ever more ubiquitous term ‘biomedical’) and calls for applications for a centre
- a consortium or collaborative – joining with a biobank facility –
responds to the call from the MRC and applies, not having to do much work because the MRC call would almost seem to have been made for them
- the consortium/collaborative’s application is accepted (despite
competition from an existing centre, that is already performing research with international collaboration and support from the charitable sector and patients)
- this consortium/collaborative – now a centre - then proceeds to
link up to NIH centres (with much of the groundwork already having been done)
- What about the patients in all this?
Ironically, there will surely be some big scientific media centre on hand to sell this to the main media streams, academia, the public and anyone else who will pick up the soundbites
Everyone comes out of this looking good, proactive, concerned for patients, reborn.
The stars are once more aligned for another three to five years.
Such a scenario would be ironic.
Could it happen?
"From even the greatest of horrors, irony is seldom absent"
can anyone tell us what this is all about?
Invest in ME Research Charity At our conference in London last week it was plain to see a hive of activity occurring – divorced from the main IIMEC13 event itself.
It was noticed that certain individuals (some deciding to attend our conference for the first time – having even ignored our previous invitations) were engaged in small huddles and little meetings during breaks, and even during lectures, busily planning.
It was the first time that we had representation at the conference from NIHR – yet the NIHR representation declined attendance at the Colloquium.
There was even a person (who had been funding research) who just turned up at the event because, it seems, he had been told (not by us) that he could just arrive for a meeting with one of the delegates who was heading these huddles (the conference was full and we had a waiting list - as indicated on the web site).
The charity had previously invited the CEO of the MRC to come to our conference - but the invitation was declined.
Yet all of the above people (as far as we know) were invited and attended a select dinner after the conference (not the one that had long been arranged by the charity) along with a number of others.
Also attending that dinner were a number of speakers from our conference who had also been invited (let us not use the term “poached”).
There were other speakers from our conference who were invited but they elected to accept the earlier invitation to IiMER’s post-conference event instead.
We will wait and see what transpires.
If the MRC (or another body such as NIHR) do open up a call for a centre of excellence then we can only hope that it will be truly open, truly transparent and not already having a pre-determined result – selecting an application from the heart of the establishment.
It would be ironic if the same people/organisations, who have continually ignored, diminished and dismissed all of IiMER efforts over the years,
and who have never supported Invest in ME Research in the efforts that the charity has made/is making to develop a Centre of Excellence hub (even stating a CoE would never happen),
and who have never supported the charity’s efforts to create international collaborations such as EMERG and the other links that have been established,
if these same people/organisations should then go on to gather all of the spoils from others’ work and ideas.
The fact that IiMER’s ideas might be taken, years late, and rehashed into a consortium which morphs from a discredited genomics study, carrying a lot of BPS baggage, into a biobank centre “of excellence” smacks more to us of self-interest and retention of influence than it does the benefit of mankind.
Irony:
a state of affairs or an event that seems deliberately contrary to what one expects and is often wryly amusing as a result.
I have a fair idea as I've been following events since 2010 when IiME(R) published their proposal to establish a Centre of Excellence for ME. The comments you quoted here follow from their comments on their link to their webpage for the Centre of Excellence, which gives some context.
It's a pity that you prefer instead to add fuel to the fire by making such comments.
