Lightning Process to be Evaluated in Research Study on Children

[Dx Revision Watch]

If it hasn't already been noted, Dr Esther Crawley is Medical Consultant to the young person's organisation AYME.

So I would not anticipate too much opposition from AYME (who have promoted RT in the past).

Suzy

 

[Dx Revision Watch]

For the sake of completeness, Heather Walker, Communications Manager, Action for M.E. put the following out on Co-Cure, on 5 March in response to an earlier Co-Cure mailing:


----- Original Message -----
From: "Heather Walker <Heather.Walker@afme.org.uk> [via Co-Cure Moderators <co-cure-mod@listserv.nodak.edu>]" <auntiem6@PTD.NET>
To: <CO-CURE@LISTSERV.NODAK.EDU>
Sent: Friday, March 05, 2010 2:04 AM
Subject: [CO-CURE] MED:NOT:ACT: IS UK CFS Charity Action for ME involved in RCT of LP? - response


[Moderator's note: responses are not normally allowed on Co-Cure, but
given the question raised in the original message, we think this reply
must be posted. However, there will be no further discussion.]


I am afraid you are mistaken Ciaran. We have done no PR for this. The press release was issued by the RNHRD Foundation Trust, not Action for M.E.

All Action for ME has done is report the news as an item on twitter - www.twitter.com/actionforme. In order to post a link to the press release, we have saved it to an internal resources section on our website and may link to it via our Daily Press Summary as and when any press clippings in.

Our policy remains unchanged when it comes to therapies which claim to offer a cure, have not been subject to research published in respected peer-reviewed journals and/or require the payment of large sums of money. See:

http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf

Heather

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

Note that this policy position is of a general nature in respect of "therapies which claim to offer a cure, have not been subject to research published in respected peer-reviewed journals and/or require the payment of large sums of money" not a position statement on this specific research pilot in children, being led by Dr Esther Crawley.

Suzy

 

[Dolphin]

Ethics

I don't know too much about the rules regarding ethical review of research but here's something somebody who seems to know something wrote.

What is the rational for this research? What theories does it underpin? From what school of thought? These questions are very rarely answered openly by those of the psychocsocial view of ME. I've recently seen a so called informed consent for for <delete> who are participating in a psychosocial intervention. there was no mention of what what actually to occur, what the focus and purpose of it was..... this happenes time and time again. pwME need ethics committee's to understand the neuro aspects of ME. The pace and fine trials got passed ethics committee's because they clearly don't.

Where is the ethics? Who approved this ethically or is going to be asked to approve this abuse? which ethics committee? they need to be informed of the potential for abuse asap. they will probably only hear from the researchers if we the ME community let them........

Since when is hypnotherapy a good idea with vulnerable people?????
Check out hypntherapies founder's beliefs if you want to get a grasp of what "it" is all about....
http://en.wikipedia.org/wiki/Milton_H._Erickson
"If the patient can be led to accept one suggestion, they will more readily accept others."
"Because Erickson expected trance states to occur naturally and frequently, he was prepared to exploit them therapeutically, even when the patient was not present with him in the consulting room."

Definately worth the charities making representation to the ethics committee(s). My guess is that it will not have made it through ethics yet. they have the money - that can come first. If pwME and theri charities were to make the university ethics committees aware of the medical and other information about the violation of pwME's human rights which is currently going on. i.e. continual denial that ME is a neurological disease then things might change............

I cannot emphasise enough that this trial is unethical and should NOT occur. there is no psychologiocal or medical rationale for the approach. Methods need to be explicit. My bet is they are currently not. Has anyone seen a LP manual? The CBT models for "CFS" are not readily avaialbe either. Murkiness is unethical and potentially abusive. The ME community has had enough.

I hope the ME charities are up to stopping this one. Do not expect that the outcome will be negative........ If they are assessing and selecting I bet they will be using as one of the measures the suggestibility questionnaire. folks who are suggestible can be easily hypnotised then you can get them to do anything you want. This cannot be allowed to happen to children with ME.

 

[Dx Revision Watch]

It should also be noted that in the most recent issue of Action for M.E.'s magazine, InterAction, the magazine has accepted two advertisements for LP.

One on Page 12 for "Phil Parker Lightning Process TM" at the Swallows Retreat, Henfield

another on Page 20 for Alistair and Kate (former ME sufferers, now "LP Trainers") in various locations.

And I don't give a Fukuda that Action for M.E. has a disclaimer along the bottom of its pages that carry advertisements.

Also note that I am subscriber to Action for M.E. not because I support their policies, the way they run their operation and the way they relate to their subscribers but because as a website owner, I need to know what they are up to.

Suzy

 

[Dx Revision Watch]

The ME Association has reported news of the study plus a copy of the Press Release here on its website News page:

http://www.meassociation.org.uk/ind...and-children-with-me&catid=30:news&Itemid=161

No comment has been made by the ME Association.

 

[fingers2022]

Can we get this clear, have you spoken to or emailed a member of the ME Association Board of Trustees?

Is so what was their response?

Tony Britton is not a member of the BoT and neither is Gill Briody (MEA HQ, salaried member of staff and Company Secretary).

You've said:



Most defintely. If the MEA is claiming to oppose this study then the BoT should be prepared to put that in writing.

Don't accept anything less. Shepherd is not comfortable rocking the boat.

So you need a written statement on behalf of the BoT.

Suzy

OK, let's start again.....

I never said I'd spoken to a member of the MEA board. The person I spoke to told me they were opposed to the study - that's all I was looking for.

I have spoken to the PA to the board at RNHRD who has agreed to pass on an e-mail from me to Peter Spencer, who is CEO at AfME and also non-exec director at RNHRD. I will report on this when I get a response.

I've also spoken to te young lady who issued the original media release, expressing my concerns. I will be following this up too.

I hope that clarifies.

 

[fingers2022]

If it hasn't already been noted, Dr Esther Crawley is Medical Consultant to the young person's organisation AYME.

So I would not anticipate too much opposition from AYME (who have promoted RT in the past).

Suzy

Thanks for that info, Suzy. Fascinating.
Keep it coming, this is really helpful.

I also love it that you don't give a Fukuda, neither do I.
F

 

[Bob]

If it hasn't already been noted, Dr Esther Crawley is Medical Consultant to the young person's organisation AYME.

So I would not anticipate too much opposition from AYME (who have promoted RT in the past).

Suzy

They still need to know about our concerns though, especially as they are supposed to represent the interests of children with ME.

 

[fingers2022]

They still need to know about our concerns though, especially as they are supposed to represent the interests of children with ME.

have made contact, speaking again tomorrow.

Also pursuing the funders - thanks for the prompt, Bob.

 

[Dx Revision Watch]

OK, let's start again.....

I never said I'd spoken to a member of the MEA board. The person I spoke to told me they were opposed to the study - that's all I was looking for.

So to whom have you spoken, please, in relation to the MEA's position on this study?

An MEA staff member?

An MEA contract worker?

A volunteer at MEA HQ?

Or a third party unconnected with the MEA?

As I've already said, Dr Shepherd has a history of not rocking the boat when it comes to opposing people like Dr Esther Crawley which is why I would settle for nothing less than a written position statement issued on behalf of the Board of Trustees.

Suzy

 

[fingers2022]

So to whom have you spoken, please, in relation to the MEA's position on this study?

An MEA staff member?

An MEA contract worker?

A volunteer at MEA HQ?

Or a third party unconnected with the MEA?

As I've already said, Dr Shepherd has a history of not rocking the boat when it comes to opposing people like Dr Esther Crawley which is why I would settle for nothing less than a written position statement issued on behalf of the Board of Trustees.

Suzy

Suzy, see PM.

Not a bad idea to contact CS though - thanks.

 

[Dx Revision Watch]

They still need to know about our concerns though, especially as they are supposed to represent the interests of children with ME.

Of course. Just don't anticipate opposition.

Suzy

 

[Dx Revision Watch]

Someone might consider approaching Jane Colby, Young ME Sufferers Trust, for that organisation's position, if this has not already been done.

 

[Dx Revision Watch]

Today was the last meeting of the APPG on ME before the election.

A contact attends these meetings with a laptop. He emails mini reports on the proceedings of these meetings out to a Yahoo Group, of which he is the owner.

The meeting is now over and he and some other attendees are in the Jubilee Cafe near the HoC. He tells us he is sitting a few feet away from Charles Shepherd, Mary Jane Willows (AYME) and Jane Colby.

I have emailed him to ask him whether the issue of the Crawley LP and children pilot was raised at the meeting.

Suzy

 

[Dx Revision Watch]

It was not raised at the meeting.

Someone has just gone over to the other table to raise it and it is apparently being discussed.

I will update if and when more information comes in.

Cool, eh?

Suzy

 

[Dr. Yes]

The Ninja has accomplices?




You're getting too high tech to be a ninja.



​

 

[Bob]

Ethics Committees (University of Bristol, and NHS ethics committees)

OK, after ploughing through the Bristol Uni website, it seems that the research is being carried out within the Faculty of Medicine and Dentistry:
http://www.bris.ac.uk/fmd/

Within the Faculty of Medicine and Dentistry is the Department of Community Based Medicine:
http://www.bristol.ac.uk/cobm/

Within the Department of Community Based Medicine is the Centre for Child and Adolescent Health. This is the specific department carrying out the research:
http://www.bris.ac.uk/ccah/


Committee for Ethics - Faculty of Medicine and Dentistry:

The Faculty of Medicine and Dentistry Committee for Ethics (FMDCE) is here:
http://www.bris.ac.uk/fmd/fec/

This Committee for Ethics' webpage links to this University webpage entitled "Research Ethics - Policy and Procedure":
http://www.bristol.ac.uk/red/support/governance/ethics/ethics.html

This webpage outlines their Ethical policy and includes the following:

"Any health-related research project which involves humans, their tissue and/or data, and/or NHS premises must be reviewed by a NHS Research Ethics Committee (REC)* prior to it commencing." (*see below for details of the NHS REC's)

"The University is concerned with protecting the rights, dignity, health, safety and privacy of research subjects."

"Virtually all research will have ethical implications but there are some instances when these will be particularly important, for example:
- where the research involves human subjects (particularly children and vulnerable adults)
- where the impact of the research may be emotionally damaging
- where the research is politically or socially sensitive"

It also says that each faculty must appoint a Faculty Ethics Officer (FEO).
The FEO for the Faculty of Medicine and Dentistry is Dr David Jessop:
http://www.bris.ac.uk/contact/person/getDetails?personKey=fRko8YpjOohshgZuVuSqYB7xdXwg4U



NHS National Research Ethics Service

*The NHS Research Ethics Committees (REC's) have an unbrella website:
The NHS National Research Ethics Service is here:
http://www.nres.npsa.nhs.uk/

And here are the NHS Research Ethics Committees (REC's) that I can find which are local to Bristol, but I don't know which one applies to the study, if any:
http://www.nres.npsa.nhs.uk/contacts/find-your-local-rec/?entryid27=18681&q=0¬bristol¬&cid=583356
http://www.nres.npsa.nhs.uk/contacts/find-your-local-rec/?entryid27=18590&q=0¬bristol¬&cid=583356
http://www.nres.npsa.nhs.uk/contacts/find-your-local-rec/?entryid27=18644&q=0¬bristol¬&cid=583356
http://www.nres.npsa.nhs.uk/contacts/find-your-local-rec/?entryid27=18681&q=0¬bristol¬&cid=583356


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

ok, now I'm totally confused and my brain hurts, so I'm going to have a rest!
Bob

 

[fingers2022]

It was not raised at the meeting.

Someone has just gone over to the other table to raise it and it is apparently being discussed.

I will update if and when more information comes in.

Cool, eh?

Suzy

Cool? Stunning!!!

 

[Dx Revision Watch]

Cool? Stunning!!!

It's not clear how many of the charity rep party are still in the Jubilee Cafe but it sounds as though the issue may have been raised with at least Mary Jane Willows (AYME). There will be an update later tonight or tomorrow morning.

The Agendas for APPG on ME meetings are largely driven by the APPG on ME secretariat - Action for M.E. and the ME Association. The Agendas are circulated between two weeks and ten days before the meeting and it would have been too late to have asked for the issue of the Crawley LP study to be tabled for discussion.

The meetings are very pressed for time. It is sometimes possible to have an issue raised at the end of the meeting under "Any Other Business". At the last meeting, I was able to email my contact during the meeting and ask that a question was raised about the availability of electronic copies of the APPG on ME inquiry "Interim Report" into NHS services for people with ME which had been handed round in hard copy, and this was raised and addressed by the Chair.

That's OK for brief questions, but there is rarely time under AOB for a full discussion of more complex issues.

At a meeting of the Countess of Mar's caucus group - Forward-ME, the issue of LP was discussed and it may have been at the same meeting that Dr Crawley gave a presentation (in relation not to LP but to the NHS CFS Clinics). I will dig out the Minutes tomorrow to remind myself what the various charity reps had said about LP, at that point.

 

[Bob]

I will dig out the Minutes tomorrow to remind myself what the various charity reps had said about LP, at that point.

Could you share any relevant quotes with us please Suzy, if you have the energy and time?

Thanks for your interesting updates on the AAPG,
That was the final meeting today, wasn't it?
Next parliament, we'll have a totally new committee, if anyone wants to do it... it will be interesting to see who gets on board.

Bob