Lightning Process to be Evaluated in Research Study on Children

[fingers2022]

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

Seems like there was some discussion about it, informally after the meeting.

I spoke with Mary Jane Willow, CEO AYME, today.

She didn't seem particularly well-informed about the LP or the study. The reason seemed to be that they are a small organisation and devote time to individual cases. Given that Esther Crawley is a consultant to them, it seems strange that MJW is not well-informed.

I suspect that this is a general problem here, that people are just not well-informed about the LP. In fact they are being mis-informed, and that's what we need to battle against. I have sent e-mail to MJM which she has said she will forward to Esther Crawley. Will let you know the response if I get one.

 

[Dx Revision Watch]

Seems like there was some discussion about it, informally after the meeting.

There was, and I can confirm that MJW was party to that discussion.

She didn't seem particularly well-informed about the LP or the study. The reason seemed to be that they are a small organisation and devote time to individual cases. Given that Esther Crawley is a consultant to them, it seems strange that MJW is not well-informed.

Obfuscation, Obfuscation, Obfuscation

Can't say any more, fingers.

 

[Dx Revision Watch]

...it seems strange that MJW is not well-informed.

I suspect that this is a general problem here, that people are just not well-informed about the LP. In fact they are being mis-informed, and that's what we need to battle against. I have sent e-mail to MJM which she has said she will forward to Esther Crawley...

Please see my Post #63, which is an extract from the Minutes of the July 09 Forward-ME meeting. This is the pertinent bit:


5. Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns.

 

[fingers2022]

Please see my Post #63, which is an extract from the Minutes of the July 09 Forward-ME meeting. This is the pertinent bit:


5. Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns.

Thank you, Suzy! Funny how gut instincts are often so accurate.

 

[Dx Revision Watch]

Thank you, Suzy! Funny how gut instincts are often so accurate.

There appears to have been quite a detailed discussion following the meeting. Since the meeting, copies of literature and documents which had been shown to the org reps to illustrate their concerns about LP have been sent to both organisation reps who had been involved in this discussion.

So...given that Dr EC is Medical Consultant to AYME, given that MJW was present at the Forward-ME meeting where Dr EC and others discussed LP, given that MJW was charged by the committee to talk to the organisers of the GOSH workshop, given the detailed information that was given (and exchanged) yesterday, given that documents have been provided to MJW and given that LP has been around for a number of years - I would trust your instincts.

 

[Bob]

I've extracted the following figures from the APPG report...

They seem to show that, out of the patients who have tried the The Lightning Process, about 50% found it helpful, more than with GET or CBT, but not nearly as helpful as Pacing... But we have to keep in mind that the patients were totally self-selecting unlike some of the GET and CBT patients who would have been encouraged and persuaded to embark on the course of 'treatment'.

And The Lightning Process makes about 16 to 20% of people worse in these surveys... quite a worrying proportion.

So, from these figures, should we expect 16 to 20% of the children in the study to be made worse?
Or would it be a higher figure, baring in mind that the children would not be told to pace themselves, and they would not be a self-selecting group of patients, but would be led into on the course without full information, and without being able to make a mature, informed decision.

(Note, these figures are not from scientific studies, but from patient questionnaires)...


Extracted from page 6 (I've taken some info out of this chart, and rearranged it slightly):

Table 2 Action for M.E. and AYME joint report “M.E. 2008: What progress” – page 13. 2763 people responded to the survey

Intervention / Helpful % / No change % / Made worse %

GET 45 21 34

CBT 50 38 12

Lightning therapy 53 31 16

Pacing 82 15 3

Rest inc bed rest 86 13 1



And, extracted from page 7 (I've massively simplified this info, and rearranged it, so there might be mistakes in it):

Table 3 Q 15 pp7 2008 MEA survey of 4,217 individuals (3,494 on-line; 723 on paper).
Preliminary survey results were published in the MEA magazine in Spring 2009

Intervention / Improved % / No Change % / Made Worse %

GET 22.1 21.4 56.5

CBT 25.9 54.6 19.6

Lightning Process 44.5 34.7 20.8

Pacing 71.2 24.1 4.7


(update: please note that i previously had incorrect figures in the last column of the last chart)
(please also note that in the last chart i have added 'greatly improved' and 'improved' together from the orginal chart and placed the combined figures under 'Improved')

Note: this forum doesn't appear to do charts very well!

 

[fingers2022]

I've extracted the following figures from the APPG report...

They seem to show that, out of the patients who have tried the The Lightning Process, about 50% found it helpful, more than with GET or CBT, but not nearly as helpful as Pacing... But we have to bare in mind that the patients were self-selecting unlike many of the GET and CBT patients.

And The Lightning Process makes about 16 to 41% of people worse in these surveys... quite a worrying proportion.

So, from these figures, should we expect 16 to 41% of the children in the study to be made worse?
Or would it be a higher figure, baring in mind that the children might not be told to pace themselves, and they would not be a self-selecting group of patients, but would embark on the course without full information, and without a mature, informed decision being made.

(Note, these are not scientific studies)...


Extracted from page 6 (I've taken some info out of this chart, and rearranged it slightly):

Table 2 Action for M.E. and AYME joint report M.E. 2008: What progress page 13. 2763 people responded to the survey

Intervention / Helpful % / No change % / Made worse %

GET 45 21 34

CBT 50 38 12

Lightning therapy 53 31 16

Pacing 82 15 3

Rest inc bed rest 86 13 1



And, extracted from page 7 (I've massively simplified this info, and rearranged it, so there might be mistakes in it):

Table 3 Q 15 pp7 2008 MEA survey of 4,217 individuals (3,494 on-line; 723 on paper).
Preliminary survey results were published in the MEA magazine in Spring 2009

Intervention / Improved % / No Change % / Made Worse %

GET 22.1 21.4 113*

CBT 25.9 54.6 39.1

Lightning Process 44.5 34.7 41.6

Pacing 71.2 24.1 9.4


(*their mistake, not mine!)


Note: this forum doesn't appear to do charts very well!

Wow, thanks, Bob. More great stuff. I'm not good at doing this stuff. Nor am I good at doing what Suzy does. But between us I think we make a great team. Keep it coming!!!!!

 

[MEKoan]

Hi Bob,

Very interesting, indeed! Thanks much for posting!

One question. Are you sure these are meant to be percentages because none add up to 100% and many go over?

I have an awful feeling that there is some really simple explanation for this that I can't see because I presently have porridge for brains.

thanks much,
k

 

[Bob]

Wow, thanks, Bob. More great stuff. I'm not good at doing this stuff. Nor am I good at doing what Suzy does. But between us I think we make a great team. Keep it coming!!!!

I can't do what you and Suzy do either, so if we make a great team, then lets keep at it!!!

fingers, please note that I've slightly re-written the intro in my previous post, which you quoted...
Also, I've just noticed that i've got some of the figures wrong.... i'll quickly change them now...

Update: I've corrected all of the figures now...
fingers, if it's not too difficult, could you edit your previous message and re-quote me please, cos some of the figures are incorrect, and i've changed the intro... sorry about that... thanks.

 

[Bob]

One question. Are you sure these are meant to be percentages because none add up to 100% and many go over?

Well spotted Koan! How the heck did you find that so quickly?... lol
it was a deliberate mistake of course, just to make sure that you're all paying attention! (ok, you guessed it.. it wasn't!)
I think it's all correct now... but let me know if you spot any more deliberate mistakes!

The original report can be found here:
http://www.meassociation.org.uk/images/stories/appg_report_final.pdf

 

[MEKoan]

You know, Bob, I'm so confused, befuddled and woolly headed today that I am actually really surprised that what I said made sense! Really!

Who knew!?!
:tongue:

 

[fingers2022]

I can't do what you and Suzy do either, so if we make a great team, then lets keep at it!!!

fingers, please note that I've slightly re-written the intro in my previous post, which you quoted...
Also, I've just noticed that i've got some of the figures wrong.... i'll quickly change them now...

Update: I've corrected all of the figures now...
fingers, if it's not too difficult, could you edit your previous message and re-quote me please, cos some of the figures are incorrect, and i've changed the intro... sorry about that... thanks.

Absolutely not, as I said I'm not good at that techie stuff

 

[Bob]

Koan, you're flying today! Imaging what you'd be like without brain porridge! You'd probably be dangerous! lol

fingers, oh well, at least you tried! lol

:tear:

(that is a laughing emo isn't it? now i can't work out if it's laughing or crying!)

 

[fingers2022]

You know, Bob, I'm so confused, befuddled and woolly headed today that I am actually really surprised that what I said made sense! Really!

Who knew!?!
:tongue:

So that's why you thought what I'd written about Wessley was good.

Hey, do you think I could post it on the BMJ site? Whad'ya reckon Justin?

 

[fingers2022]

Koan, you're flying today! Imaging what you'd be like without brain porridge! You'd probably be dangerous! lol

fingers, oh well, at least you tried! lol

:tear:

(that is a laughing emo isn't it? now i can't work out if it's laughing or crying!)

It's SW sweating

 

[MEKoan]

:tear:

Ah, Min, this mockery is vital to the effort of stopping the madness that is Simon Wessely.

And, everyone else, I am dangerous!

 

[fingers2022]

:tear:

Ah, Min, this mockery is vital to the effort of stopping the madness that is Simon Wessely.

And, everyone else, I am dangerous!

Mockery?

On Monday, I'm going to see my GP to tell her I've heard that there's this geezer who's a dab hand with CBT/GET/LP, and that I'd like a referral (she usually does what I tell her).

I can't wait to meet him. Or maybe I should wait until I can take me XMRV positive result along with me so that he can ignore it :tear::tear::tear::tear::tear::tear:

Sweat man, sweat.

 

[Dolphin]

21% made worse by LP in MEA survey

People can see the ME Association survey stats in full at page 7 of this report:
http://www.meassociation.org.uk/images/stories/appg_report_final.pdf

(Note that the last column is "made slightly worse" and "made much worse").

Here are the results for LP:

Lightning Process (LP)

Response Count: 101
Greatly Improved: 25.7%
Improved: 18.8%
No Change: 34.7%
Slightly Worse: 7.9%
Much Worse: 12.9%
Much Worse + Much Worse: 20.8%

Part of the LP treatment is you are supposed to go around telling people how well you are so I distrust positive results.

 

[Bob]

"Smile now, cry later"

Here's an interesting article about 'positive thinking' therapies... it links in with our discussions about The Lightning Process, and it also mentions CBT...
(the article inlcudes the words: 'the cult of positive psychology')

http://www.newstatesman.com/health/2010/03/positive-psychology-happiness

 

[Dx Revision Watch]

Note: this forum doesn't appear to do charts very well!

If ever you can't extract a table or an image from a PDF, try this:

Reduce the PDF display size so that the image, table, PowerPoint slide etc is not too big to insert into a posting but is still legible.

Do a screen shot.
Paste screen shot into an image editing program - Paint will do.
Crop and save to a .png file, if text like a table or a PowerPoint slide, or save as a .jpg for an image.
Upload to Tinypic or Flickr or to a blog files facility, or similar where the file can be grabbed from.
Insert file URL into posting as an image file (Button with tree).

You can use attachments on posts as well.