Imperial College now offering PCR XMRV testing

[_Kim_]

Someone needs to get an FOI in. I am up to my eyes at the moment and I cannot take this on.

All that is required is for the information requested to be set out clearly. You do not have to specify that you are requesting information "under the FOI Act" but you may as well request under FOI.

ICL will have an FOI page with the contact for the FOI office. You can do it via email. They will likely take 20 working days before a response is received.

Word it carefully in order to capture the data required.

Here's the ICL FOI page.

Who's up to taking this on?

 

[Dx Revision Watch]

Since when does anyone have to pay to participate in ethically approved research projects? It's usually the other way around...

Quite.

Is anyone up for putting in an FOI? It does not have to be from within the UK.

I'd do it, but the DSM-V draft is scheduled for publication Wednesday and there's stuff I need to do before that and other stuff.


Is that an Egon Schiele, Kim?

 

[_Kim_]

Okay Suzy. I thought it had to be someone from UK. In that case, I'll get working on it. I've never done this before - can I run it by you before I send it off?

ETA: yes, that's Schiele

 

[Dx Revision Watch]

Here's an FOI from last year

A blank example from an FOI from last year:



To: Records Manager, FOI, and Data Protection Officer: XXXXXXXXXXXXXX


Re: Request for information under FOIA in respect of XXXXXX


I should be pleased if receipt of this request for information could be acknowledged, together with the date by which a response will be provided.

I request the following information under the Act:

Project Supervisors:

Project title:

Laboratory supervisor:

Clinical supervisor:


1] Any Identification or Reference code assigned to Project

2] Project's Public Title;
Project's Scientific Title

3] Study hypothesis/rationale (where applicable)

4] Ethics approval and any reference numbers attached to this approval

5] Study design

6] Countries of recruitment; Centres of recruitment

Through what means will prospective participants be recruited?


7] For what Diseases/conditions/study domains are patient samples to be collected?


Through what means will control samples be assembled?


8] Participants - inclusion criteria

9] Participants - exclusion criteria

10] Target number of participants

11] Patient information material: please provide copies of any patient information material

12] Anticipated start date

13] Date by which Project is anticipated to complete

14] Sources of funding

15] Sponsor details

 

[_Kim_]

Suzy, what do I fill in for this:

Re: Request for information under FOIA in respect of XXXXXX

 

[Dx Revision Watch]

OK OK OK

(it won't accept only two characters)

 

[Dx Revision Watch]

Suzy, what do I fill in for this:

something like

All ongoing research projects or scheduled research projects relating to XMRV detection via blood samples or via any other methods of detection.

(which leaves it non specific to either prostate or CFS or to blood)

You don't want to tie yourself down to any specific patient population or detection method.

 

[flex]

Suzy, what do I fill in for this:

Kim I wish I could help. If you get an outline of what you need to request I'll try. PM me or we could talk it out in the "pub".

Ill stay logged in to chat and listen out for a welcome.

 

[Dx Revision Watch]

Just one point.

Unless different information is being requested there is no advantage to having multiple submissions made under FOI for the same information.

Also, requests under FOI are handled by individuals in an FOI and Data Protection Office with no interest in, or specific knowledge of the issues surrounding requests for information; either the information is held, or it is not; either the information can be provided or is subject to one or more exemptions.

If the information is denied the Office should cite the reasons and the specific clauses of the Act which apply.

There is no point in adding any other material, opinion or whatever, since these requests are straightforward requests for information held by an institution and not a vehicle for advocacy.

 

[Dx Revision Watch]

I would also ask why a charge of 200 was being made for the test if the testing is being carried out as part of a research study.

Also why the test was being advertised to referring doctors and hospitals on the website if the testing is being carried out as part of a research study.

My example above related to a PhD project.

You'll also want the Principal Investigator(s) names and project collaborators names and institutions.

 

[_Kim_]

something like

All ongoing research projects or scheduled research projects relating to XMRV detection via blood samples or via any other methods of detection.

(which leaves it non specific to either prostate or CFS or to blood)

You don't want to tie yourself down to any specific patient population or detection method.

Ok, Suzy.

I emailed IC with a request for information. Done.

ETA: Dang, I didn't see your last 2 posts and didn't include those questions. Can I send an addendum to the request?

 

[Dx Revision Watch]

Yes, you can.

Ask for it to be processed with the first request.

Ask for both to be receipted and ask for a Reference number (they don't all give one) and they won't all receipt unless you ask them if you have not already done so.

When they receipt, they should also tell you the date by which you should expect a response (on or before 20 working days).

Well done. I really did not want to have to do one today.

 

[Cort]

Imperial College offering an XMRV test - for a bug they don't believe is present - would be funny if it wasn't so weird. I can't believe they're doing this. Maybe they retained Dr. Reeves as an advisor - and he immediately gave them the kind of shoot yourself in the foot moment he's so good at.

 

[jspotila]

Back pedal!!!!!

So much for the IC offering testing for XMRV. They are withdrawing it from public availability.

 

[julius]

Kim and Suzy,

You guys are the best.

If it's not too late, can you ask for specifics regarding any changes to their testing method?
I really want to know if they are going with the exact same method or if it's changed.

 

[Gerwyn]

Imperial College offering an XMRV test - for a bug they don't believe is present - would be funny if it wasn't so weird. I can't believe they're doing this. Maybe they retained Dr. Reeves as an advisor - and he immediately gave them the kind of shoot yourself in the foot moment he's so good at.

Hi Cort
If my experience in medical politics is anything to go by---There is a strategy here!

 

[julius]

So, now they have taken down all info regarding the test. They don't even have a link or info for doctors who want to order the test?

They play a really bad game of chess.

 

[Gerwyn]

One of the powerful ME actions in the UK was at the High Court with the Judicial Review. Lots of photos of people outside the court building

See down toward the bottom of this page

http://www.nicemecourt.co.uk/Outside_the_court.htm

Koan is right about there being a lot of experience here in the UK.

-------------------------------------------------------------------------------------------------------------

With one particular problem / impasse I took myself down to a conference in the UK with a pile of printouts and gave them out by the door explaining the problem. Security and the organisers came out to negotiate but they didn't get too tough because of the number of people that I spoke to.

They were actually mortified that I would air their dirty linen in public.

The became more manageable in the following weeks and we gained some concessions.

If we can get a "foot through the door" in some of these places it does become easier but patients do need to be prepared to do this. The problem is that many PWME cannot leave their homes and bed. I can only do so a small amount of the time.

Why more parents, siblings and partners aren't doing this I simply don't understand.

Before I became so very badly disabled I joined Act-up and learned a lot from them.

Hi Ukxmrv I,m afraid that they got the entire legal argument wrong our side did not know the law and the poor barrister did not undrstansd the science

 

[Funkster]

This is just unbelievable unprofessional of IC. Its so unprofessional that I dont think there are not any strategy behind it at all.

Its just weird and very bad communication skills.

Who are they communicating to through their website?

A selected and known group of GPs?

Why use a websit if thats the case?

Weird and unprofessional...

 

[Lily]

XMRV testing
We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.

How bizarre......and is "an ethically approved research project" something novel? Or are most research projects specified as ethically or unethically approved?