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SMILE - Lightening Process - Trial Feasibility Study Published

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I vaguely recall the argument being along the lines of: lots of children are already doing LP, so might as well do a trial.

Exactly - and hence my point. If only 250 kids were said to have been doing LP annually - it's hardly 'lots' is it? There was more to this being taken on at the time than is apparent now.

Lobbying I dare say. Perhaps a few 'known' people said they had found the LP useful to Esther, or she was seeing in clinic, parents whose kids were being pushed into this well-advertised therapy: and thought it should be tested.

I just don't see there was ever much of a case. It should be Phil Parker seeking to prove and provide evidence for his claims - not the NHS and not using the small funding we are able to obtain for ME.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Did a quickish Highwire search for 'cfs, children and adults' in abstracts and got 50 hits, many by Crawley, Wessely et al., but these two mention biochemical correlates:

http://archpedi.jamanetwork.com/article.aspx?articleid=383727

Biomedical anomalies seen in adults with CFS/ME—increased oxidative stress and increased white blood cell apoptosis—can also be observed in children with clinically diagnosed CFS/ME compared with matched controls. Unlike in their adult counterparts, however, arterial stiffness remained within the reference range in these pediatric patients.


http://www.ncbi.nlm.nih.gov/pubmed/17561704

Routine laboratory studies are similar to adult CFS, although abnormalities can be seen on serum pyruvic acid level, OGTT pattern, deep body temperature rhythm, hormonal secretion rhythm, and cerebral blood flow. For a diagnosis of CCFS, a research group supported by Japanese ministry of health, labor and welfare developed CCFS case definition on 2004. Treatment focused to correct disrupted circadian rhythms and supply of energy.
 
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Messages
13,774
Lobbying I dare say. Perhaps a few 'known' people said they had found the LP useful to Esther, or she was seeing in clinic, parents whose kids were being pushed into this well-advertised therapy: and thought it should be tested.

I just don't see there was ever much of a case. It should be Phil Parker seeking to prove and provide evidence for his claims - not the NHS and not using the small funding we are able to obtain for ME.

The Sussex and Kent ME Society is one of the few patient groups happy to play along with the quacks, and seems keen on LP. Esther Crawley is their medical advisor.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
If we lived in an ideal world I would agree with you. However, there is a vast amount of information out there about how trials should be conducted (e.g. in relation to: response bias, placebo effect, open-label trials vs blinded trials, and how to design appropriate controls etc.) But very little of it is understood, or known about, or taken into account, by a large number of lay people, decision makers, health workers and academics. I don't think I've ever seen a single academic (or health worker etc.) (who isn't a patient) say that the improvements seen in the PACE trial could be explained by response bias or placebo effect. And the lack of clinically significant objective improvements are rarely mentioned, if ever, except by patients.



I wonder how such such an outcome would then play out in the health establishment? Would LP become the new therapy of choice, or would a territorial battle develop between LP proponents and CBT/GET proponents? Or would they try to merge LP into CBT for ME? (Oh joy!) Or would it enable us to to successfully challenge CBT/GET/LP and expose them for what they are? (i.e. purely processes that change the way that patients answer questions in relation to their symptoms and disability, and the way they subjectively interpret their illness and disability.)

Maybe the LP, CBT, GET crowd would like to become political pollsters. Then their talents could truly shine.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The Sussex and Kent ME Society is one of the few patient groups happy to play along with the quacks, and seems keen on LP. Esther Crawley is their medical advisor.
And they have a number of other medical advisors:
http://www.measussex.org.uk/About-Us-ME-Support-in-Brighton/meet-the-medical-advisors-experts.html

The Sussex and Kent ME Society do promote the Lightning Process, but perhaps they are quite careful with their wording.
e.g:
"...and alternative approaches such as Yoga, Nutrition, Acupuncture and Homeopathy along with the Lightning Process are rated highly by patients who have benefited from them."
http://www.measussex.org.uk/Research/
"During the event there was a debate about the effectiveness of the Lightning Process that is an alternative approach that is helping some with the illness quite dramatically."
http://www.measussex.org.uk/Main/south-east-medical-conference.html

In a survey, that they carried out, 80% of those who responded to the particular question about the Lightning Process (it doesn't say how many responded to that question), said that the Lightning Process was helpful.
But it should be noted that the Sussex and Kent ME Society may not be representative of the general ME population.
Especially because it has historically accepted the cognitive-behavioural model, and has been involved with proponents of the cognitive-behavioural model, so patients who find this approach insulting or unhelpful may not stick around. It has a small membership, especially considering the combined population size of Sussex and Kent.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
If you click on the link that relates to the quote, it takes you to the SMILE Feasibility Study, I had thought you were indicating recruitment for the full trial, but I'm not sure it demonstrates this there.

Indeed most if not all of the documents attached to that page are dated 2010, and I think two from 2011; so I would suggest this is an old link referring to the Feasibility Study that has just been published and the recruitment for that study, not any subsequent one.

The feasibility study, that they've just published, is a part of the process of setting up a full trial. It tests the full trial's protocol and methodology on a smaller number of patients. I think they started designing the full trial years ago, and I think the 2010/11 literature relates to the full trial. But I don't know if the 2010/11 literature is includes any changes they made after the feasibility study. They haven't posted continuous updates, so it is quite confusing.
 
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user9876

Senior Member
Messages
4,556
The feasibility study, that they've just published, is a part of the process of setting up a full trial. It tests the full trial's protocol and methodology on a smaller number of patients. I think they started designing the full trial years ago, and I think the 2010/11 literature relates to the full trial. But I don't know if the 2010/11 literature is includes any changes they made after the feasibility study. They haven't posted continuous updates, so it is quite confusing.

Is this just a way of cherry picking of data early in the trial process (by seeing what the feasibility study says) so its less embarrassing than changing it once data has been collected like with the PACE trial.
 

Dolphin

Senior Member
Messages
17,567
Bob said:
The feasibility study, that they've just published, is a part of the process of setting up a full trial. It tests the full trial's protocol and methodology on a smaller number of patients. I think they started designing the full trial years ago, and I think the 2010/11 literature relates to the full trial. But I don't know if the 2010/11 literature is includes any changes they made after the feasibility study. They haven't posted continuous updates, so it is quite confusing.

Is this just a way of cherry picking of data early in the trial process (by seeing what the feasibility study says) so its less embarrassing than changing it once data has been collected like with the PACE trial.
Yes, it does seem unsatisfactory that way. I think they should publish the data from the feasibility part of the study. It even seems somewhat unethical to collect all the data from the patients, requiring them to fill in lots of forms, and not publish it as they would have expected.
 

Dolphin

Senior Member
Messages
17,567
Yes, it does seem unsatisfactory that way. I think they should publish the data from the feasibility part of the study. It even seems somewhat unethical to collect all the data from the patients, requiring them to fill in lots of forms, and not publish it as they would have expected.
Also, the intention seemed to be to publish the data: why else have set primary and secondary outcomes? If you just wanted to see what comes back, one wouldn't need to divide outcomes into primary and secondary outcomes.
 

Tom Kindlon

Senior Member
Messages
1,734
I'm a bit rusty on lightning process matters.

I'm planning on writing a quick e-letter on this saying that self-report measures are far from ideal for a trial of Lightning Process. Ideally I'd like to have a few references: I doubt there are suitable papers so webpages could do. Ideally first-hand descriptions of what is involved/being told to say you're well/don't have symptoms/don't have limitations. If anyone has any ideas, please reply or private message me. There are likely some in this thread or the other lightning process trial thread but I have other things I also need to be doing so would appreciate some help. Thanks.
 
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Tom Kindlon

Senior Member
Messages
1,734

Dolphin

Senior Member
Messages
17,567
Includes 3 people with "CFS/ME" who got worse after LP

Glob Adv Health Med. 2012 Mar;1(1):30. doi: 10.7453/gahmj.2012.1.1.008.
Worst Cases Reported to the NAFKAM International Registry of Exceptional Courses of Disease.
Fønnebø V, Drageset BJ, Salamonsen A.
Author information

KEYWORDS:
CFS, Exceptional Courses of Disease, Lightning Process, ME, NAFKAM, Registry, case reports, chronic fatigue syndrome, hematologic cancer, homeopathy, myalgic encephalomyelitis, necrotizing vasculitis, prostatitis, sinusitis, worst cases


PMID:

24278799

[PubMed]
PMCID:

PMC3833488

Free PMC Article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3833488/
 

Dolphin

Senior Member
Messages
17,567

HowToEscape?

Senior Member
Messages
626
It is based on affirmations and counteracting negative thoughts. Dorothy got back to Kansas using the Lightning Process -- there's no place like home, there's no place like home, there's no place like home.

" Dorothy got back to Kansas using the Lightning Process"
Well there you have it, it is proven to work! Now GET along to our wonderful show ;-)
 

anni66

mum to ME daughter
Messages
563
Location
scotland
I have a child with ME and have been told about another 4 other children within the same area. I think often children are not well enough to attend school.
My daughter has ME, and i mean ME and not CFS. Trigger was glandular fever - i do not know what the actual prevalence is ( EC conflates chronic fatigue with ME as it suits her purposes). There are a number of parents' forums offering support for those with children affected with this illness. Comorbidities such as EDS and POTS seem common too
I do know that there are a growing number of young girls with ME and other significant chronic illnesses after Gardisil injections (HPV). This remains controversial and denies many a firm diagnosis.