Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

SMILE - Lightening Process - Trial Feasibility Study Published

Discussion in 'Latest ME/CFS Research' started by Firestormm, Dec 6, 2013.

  1. Firestormm

    Firestormm

    Messages:
    5,022
    Likes:
    4,826
    Cornwall England
    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.
     
    Bob, Valentijn, beaker and 1 other person like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,951
    Likes:
    12,748
    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


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

     
    Last edited: Dec 9, 2013
    anni66 and Valentijn like this.
  3. Esther12

    Esther12

    Messages:
    8,453
    Likes:
    28,549
    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.
     
    Bob and Valentijn like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,895
    Likes:
    10,072
    Maybe the LP, CBT, GET crowd would like to become political pollsters. Then their talents could truly shine.
     
  5. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,942
    England (south coast)
    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.
     
    Last edited: Dec 9, 2013
    Esperanza, Valentijn and Esther12 like this.
  6. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,942
    England (south coast)
    Yes, and according to my memory (which is unreliable), the trial ethics committee completely accepted this argument.
     
    Last edited: Dec 9, 2013
  7. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,942
    England (south coast)
    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.
     
    Last edited: Dec 9, 2013
  8. user9876

    user9876 Senior Member

    Messages:
    2,589
    Likes:
    18,248
    moderated with many others
    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.
     
    Orla, Valentijn, biophile and 4 others like this.
  9. Dolphin

    Dolphin Senior Member

    Messages:
    10,637
    Likes:
    28,054
    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.
     
    Snow Leopard, Orla, Simon and 5 others like this.
  10. Dolphin

    Dolphin Senior Member

    Messages:
    10,637
    Likes:
    28,054
    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.
     
    Valentijn likes this.
  11. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,372
    Likes:
    8,233
    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.
     
    Last edited: Dec 18, 2013
    MeSci, Bob and biophile like this.
  12. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,372
    Likes:
    8,233
    anni66, MeSci, Valentijn and 3 others like this.
  13. Dolphin

    Dolphin Senior Member

    Messages:
    10,637
    Likes:
    28,054
    Includes 3 people with "CFS/ME" who got worse after LP

     
    Sean, biophile and Valentijn like this.
  14. Dolphin

    Dolphin Senior Member

    Messages:
    10,637
    Likes:
    28,054
    https://www.facebook.com/tom.kindlo...=1527904110637443&comment_tracking={"tn":"R"}
     
  15. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    433
    Likes:
    544
    " 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 ;-)
     
  16. Dolphin

    Dolphin Senior Member

    Messages:
    10,637
    Likes:
    28,054
    AndyPR and Invisible Woman like this.
  17. Dolphin

    Dolphin Senior Member

    Messages:
    10,637
    Likes:
    28,054
  18. anni66

    anni66 mum to ME daughter

    Messages:
    176
    Likes:
    759
    scotland
    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.
     
  19. Kalliope

    Kalliope Senior Member

    Messages:
    367
    Likes:
    3,536
    Norway
     
    ukxmrv, Chrisb, Esperanza and 7 others like this.
  20. Invisible Woman

    Invisible Woman Senior Member

    Messages:
    1,212
    Likes:
    7,403

See more popular forum discussions.

Share This Page