Clarification: LP threads

[Dx Revision Watch]

In a thread which has now been closed, Cort has written:

With regard to those two stories being on the Front Page the MD on the Lightning Process was in the Front Page section but it was actually not published on the Front Page; ie it was not visible to people looking at the Front Page because I knew it would arouse strong emotions. I would also note that those posts also provided information to people who do not want to see the LP study on children occur and helped to galvanize them into action. That is another reason why I believe we should not censor information or topics on this forum.

I'd like to point out that before Cort posted the Dr Frivoldi "recovery with LP" article, that there were already two other well established threads that had been discussing the issue of the pilot study into the feasibility of recruiting to an RCT into LP for children 8 to 18.

"Action" was already underway at the point at which Cort published the second Dr Frivoldi piece and did not result out of Cort's LP/Dr Frivoldi blog article and much of the information posted in the thread and comments attached to the Dr Frivoldi piece were transferred from these other two established threads.

Those threads, which are still active, can be found here:

Lightning Process to be Evaluated in Research Study on Children

http://www.forums.aboutmecfs.org/sh...to-be-Evaluated-in-Research-Study-on-Children

My son & i are giving the lightning process a go on this week

http://www.forums.aboutmecfs.org/sh...iving-the-lightning-process-a-go-on-this-week

Suzy

 

[Dx Revision Watch]

I'd like to expand on this because I am feeling somewhat miffed.

The Press Release announcing the pilot LP study: "Research study to investigate a chronic childhood condition" had been issued on 3 March.

On 10 March, an attendee at the All Party Parliamentary Group on ME meeting raised concerns about the pilot study with representatives of children and young person's organisations, and also with a representative from BRAME, on behalf of those of us unable to attend this meeting, and discussed the process in some depth with them.

These discussions were followed up with information on LP being emailed to all three organisations.

The thread:

Lightning Process to be Evaluated in Research Study on Children

was started by Jenny on 4 March.

The thread:

My son & i are giving the lightning process a go on this week

was started by Coxy on 20 March.


In the weeks that followed the issuing of the press release, a member of this forum established a dialogue with several national patient organisations and with the funders of the proposed study.

Another member of this forum undertook research into children's advocacy agencies, another into ethics committees.

Dr John Greensmith had a letter published in a regional newspaper for which a number of comments were published.

A great deal of awareness raising was undertaken on various Facebook sites, on Co-Cure, on blogs and on other platforms, including Bad Science.

A large number of members contributed information on LP and comment across three existing threads - one around LP in general, but two specifically on the application of LP in children.

I submitted a comprehensive request for information under the FOI Act on 16 April (a second request was submitted to U of Bristol on 16 May, the response to which I shall publish shortly).


On April 30th at 04:00 PM I published a copy of the first FOI request questions.

Later that day, Cort published the second Dr Frivoldi piece in which Dr Frivoldi made some very contentious comments about using children in research studies and painted ME patients' legitimate concerns about LP in what I considered to be inflammatory language.

Although the piece was titled "An MD on the Lightning Process" - Dr Frivoldi is a cardiologist - not an ME or CFS specialist, nor a paediatrician and this was more an opinion piece and not an analytical report on the application of the process by an independent MD.

Comments and information followed the blog post and on the thread that ran in parallel to the blog.

Much of the information posted in response to the Dr Frivoldi piece was imported from the existing, well established threads on the LP study and children.


At one point, Cort made the odd remark that he was surprised that discussion was still going on in relation to LP. Why did he think that discussion around LP and specifically the pilot study was going to fizzle out?


Now Cort is claiming credit for helping "to galvanize" people "into action" and using that to lend weight to his justification for giving a second platform to Dr Frivoldi, to his wife's experience (now an LP practitioner, herself) and to his controversial views on the use of children as LP guinea pigs when no rigorous, controlled trials into LP have been undertaken in adults.

So a great deal of "action" has been going on in the UK since 3 March and had been underway well before Cort published the second of Dr Frivoldi's articles, on 30 April.

I find it supremely presumptious that Cort now seeks to claim that in giving a platform for a second piece from Dr Frivoldi and his LP practitioner wife that this has helped "to galvanise" people into "action".

Suzy

 

[Dx Revision Watch]

I should like to thank all those who have been working in various ways on this issue, in the UK, since the press release was issued on 3 March.

 

[Dx Revision Watch]

In a thread which had already been closed by moderator Martlet, moderator Mark has since added:

http://www.forums.aboutmecfs.org/sh...is-site-so-empty&p=92799&viewfull=1#post92799

BUT: Look at what the membership did with that thread. The community spoke. Anyone reading listened. I am educated now on the issues around the Lightning Process. Cort posted the view in favour, the community ripped the thing to shreds and highlighted the massive ethical concerns over the child studies. That was an opportunity to express those views. Cort did nothing to censor that as far as I can see: it's still there. And the site now contains information on the Lightning Process - putting both points of view. The husband of an LP practitioner says it's pretty cool and sets out his case; the open ME/CFS community convincingly says it's a load of crap, as far as people with ME are concerned at least.

Evidently it needs reiterating that weeks before Cort published the Dr Frivoldi blog article on 30 April (the second of two pieces about Dr Frivoldi's LP practitioner wife), a great deal of discussion about the LP pilot using children 8 to 18 had already taken place.

Considerable concern had already been expressed and a large amount of information around LP had already been posted on two very active threads since the pilot study press release had been issued, on 3 March.

This Cort's Dr Frivoldi blog post "galavanized action" , Cort's Dr Frivoldi thread afforded an "opportunity to express [opposing] views" and "the site now contains information on the Lightning Process" thing is wearing pretty thin with those of us working on this issue in the UK.


Cort's Dr Frivoldi blog post of 30 April did not help those of us in the UK working on this issue, as we then had the extra work of countering the views expressed by Dr Frivoldi.


Readers may wish to note that a second FOI, submitted on 16 May, for which a response was received on 17 June, has provided the information that the study is still going through the ethics approval procedure.

(An initial FOI submitted to the Royal National Hospital for Rheumatic Diseases, Bath on 16 April, had received the response, on 11 May, that the information requested was not being held by that institution.)

A full copy of the response from University of Bristol has been posted in this thread:

http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=93395&viewfull=1#post93395


It would be a courtesy if the efforts of all those in the UK who have been working hard on this isssue, in various ways, since two months before Cort published the second of two articles from Dr Frivoldi had been acknowledged.

This is a UK study by a UK research team intent on using UK children, some as young as eight. We could have done without the extra work that Dr Frivoldi's article generated.

Perhaps Dr Frivoldi includes me when he wrote:

I find it puzzling to read the kind of malignant comments some of your bloggers place on your web-site and else-where (from what I can see it’s often the same comments from a select group of individuals in a variety of venues).

We could have done without that, too.

I shall be posting no further LP related material on this site.

Suzy Chapman

 

[V99]

I find it puzzling to read the kind of malignant comments some of your bloggers place on your web-site and else-where (from what I can see it’s often the same comments from a select group of individuals in a variety of venues).

I would like to add that Dr Frivoldi is very much mistaken if he believes this to be a reason for gaining ethics approval. If the concerns expressed are valid, they are valid.

Personally, I believe they are, and can see no reason why you would test this on children first, unless you expect or want, to get a different result.

 

[V99]

Cort, can I suggest you post one of the other stories. Where people have been made worse with LP, after all anecdotal evidence is all we have.

 

[Dx Revision Watch]

Please note that I shall be posting no further material or comment on LP or on the proposed UK pilot study using children on Phoenix Rising forums or blogs.

For updates, please refer to my ME agenda site and Co-Cure.

Please see this post:

http://www.forums.aboutmecfs.org/sh...ation-LP-threads&p=93705&viewfull=1#post93705

Suzy Chapman

 

[Mithriel]

Thank you and the others for all the wonderful work you have done trying to protect our children from this malignant exploitation.

The fact it can even be countenanced shows how badly we are all treated by the medical profession in the UK and elsewhere.

The resounding silence from those claiming to represent the patients' interests has also shown exactly where they stand.

Mithriel

 

[gracenote]

Suzy,

I so very much appreciate all the work you've done to inform and bring clarity to this issue. It will be a huge loss to Phoenix Rising to no longer have the benefit of your excellent commentary and updates regarding this trial being proposed on children with ME.

Thanks again for your diligence,

gracenote

 

[maryb]

Suzy just wanted to add my thanks to the others, your hard work on making all the information available to us has been much appreciated, I sincerely hope it has a successful outcome (ie the study is cancelled) and children are spared the punishment of suffering this programme.
many thanks

 

[Cookie Monster]

In addition to Suzy's sterling afforts - id also like to highlight another important point about the LP.

MEA's large patient survey has been referred to as being evidence to suggest the LP is worthy of being given consideration. Quoting the result that 25% of patients surveyed reported considerable improvement following treatment is dangerous because it fails to take into account the full nature of the circumstances involved.

What commonly seems to happen with the LP is that many patients get a short term placebo-affect boost from this motivational-style talking therapy, put their Pacing on the back-burner and proceed to try to achieve far too much. Many suffer severe crashes in the medium term, meaning their situation actually becomes much worse.

The MEA survey took place in summer 2008, the LP was i think new so only just out then. Only 100 people out of approx 4000 on the survey had actually tried it (2.5%). This means only 25 people recorded a significant improvement from LP - but this still had to have been only viewing their results on a very short term basis because of the timing of the survey. I suspect many of those 25 people would be less complimentary if surveyed again now .

CM