1. Guest, the 'News in Brief' for the week beginning 16th January 2023 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Website 'neurosymptoms.org' founded by Jon Stone, funded by the Scottish Government promoting Recovery Norge

Discussion in 'General ME/CFS news' started by Sly Saint, Oct 31, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    8,293
    Location:
    UK
    I didn't know how to title this as there are so many problematic issues.
    This is a website called neurosymptoms.org

    There are pages dealing with FND symptoms.
    This one is on visual symptoms

    https://www.neurosymptoms.org/en_GB/symptoms/fnd-symptoms/visual-symptoms/

    the chronic fatigue syndrome link takes you to a page on 'Fatigue'

    yet it then goes on

    https://www.neurosymptoms.org/en_GB/symptoms/common-associated-symptoms/fatigue/

    Funded by Scottish Government
    [​IMG]



    eta: it also links to the NHS website, (which we have already seen is pretty awful) but I have only just realised that afaik there is no mention that LP should not be offered to pwME by the NHS.

    eta: following post by andy, it appears this site crops up a lot. I had not previously picked up on their connection to Vogt, the LP and Recovery Norway.
     
    Last edited: Oct 31, 2022
    Hutan, Lou B Lou, Solstice and 12 others like this.
  2. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    1,077
    :mad::banghead::nailbiting:

    What on Earth is allowing people to use public money or reputation towards this sort of thing.
    Isn’t ‘recoveryNorway’ the dodgy outfit behind lots we’ve seen on here ?

    who is this neurosymptomsorg?
     
  3. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    1,077
    Just read some of the 'professionals on recovery' section - I'm not fully sure what they are (given they are commenting mainly on the idea of having a website with 'recovery stories' rather than experience of whatever the org is if that is different):


    2 examples:

    Anyway they seem to be pushing the either misinformation or misunderstanding that the bias for ME/CFS has been the opposite way round to what it has - given these individuals (e.g. King's COllege London is one UK example) seem to be from those who have 'owned' the treatment and the PR articles for decades.

    Lots of the usual conspiracy nonsense from them pretending 'their good messages have been prevented from getting out' and some, incrediby, suggesting that these 3 anecdotes represent 'science' or 'a basis for it'.

    All very strange. And noting that one case study clearly talks about somewhere in Newcastle that offers the LP - and this is a Scottish funded website - and I've only delved for a few mins I'm not convinced this is coincidental or 'just for information or inspiration' or that anyone is that stupid who funded this with public money etc. to not notice that?

    OK I guess on the support us page where you can donate, the 'mission statement' is apparently clear:

    "Your contribution goes entirely to the work of Recovery. The more funding we have, the greater our opportunities for achieving our mission of providing hope and understanding based on the narratives of our recovered individuals."

    Sounds very SMC and it really isn't very clear who is behind it, other than them stating it is people who do it voluntarily (is that actually 'enough'?)


    Becoming a member page: (my bolding)

     
    Hutan, RedFox, Peter Trewhitt and 3 others like this.
  4. Andy

    Andy Committee Member

    Messages:
    18,586
    Location:
    Hampshire, UK
    Hutan, alktipping, Lilas and 5 others like this.
  5. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    1,077
    OK I've just googled and it seems that there is suggestion Recovery Norway was founded by those associated with the Lightening Process, Live Landmark etc - given the Nice guideline's clear stance on this 'problem programme', and previous advertising standards issues how is this happening?

    I did find it pretty unusual to have a website where the 'about us' was mysterious on who the 'us' was. Lots of defensive sounding stuff about how they aren't paid, and some members do bring conflicts but they are later joiners etc.

    This is all so unsettling if this is the case that it unpicks exactly as it seems?
     
    alktipping, Peter Trewhitt and Sean like this.
  6. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    1,077
    Sorry I'm just posting bits as I'm a bit shocked by what I'm finding. Bu the following news article is linked to from MEpedia: Attempted suicide after ME course – NRK Lifestyle – Tips, advice and insight

    You'll need to use the translate function in browser to read it.

    COuldn't help but note the circular issues of the last para using 'it having some commonalities with CBT' to justify it [not being based on any science] - although I guess back in 2011 it was before PACE was debunked on CBT too. And before the 2021 Nice Guideline notes that CBT is not a treatment for ME.

    Shows the sophist/rhetorical thinking though I guess from certain quarters and how the whole thing needs re-education from the roots as there is a 'tentacles issue' potentially from certain quarters otherwise.

     
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    8,293
    Location:
    UK
    yes sorry I should've searched the forum for it.
    according to this post
    "rarediseases.org recommends https://www.neurosymptoms.org/en_GB/ which was set up in 2009 by
    Professor Jon Stone"
    https://www.s4me.info/threads/funct...rs-discussion-thread.13050/page-8#post-383494

    but I hadn't previously picked up on their connection to Vogt, the LP and Recovery Norge.

    and what's with the funding from the Scottish government?
     
    Last edited: Oct 31, 2022
  8. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    5,239
    Location:
    Australia
    "I can see qualms about treatments that are not scientifically documented..."

    :banghead:
     
  9. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    1,077
    "as well as have commercial interests such as this course..."
     
    Hutan, Sean, alktipping and 2 others like this.
  10. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    3,444
    Location:
    UK
    Maybe someone on Twitter might volunteer to ask Carol Monaghan if she knows?? She represents the governing party (SNP).
     
  11. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    3,239
    From their website: " Neither can you have recovered from alternative therapies that are not compatible with scientific world view or model of the body."

    I don't think "changes in thinking", noted on the website as acceptable for "recovered" persons to recount, are "compatible with a scientific world view or model of the body."

    Where is the incontrovertible proof of this?
    :wtf::banghead:
     
    Last edited: Oct 31, 2022
  12. Ebb Tide

    Ebb Tide Senior Member (Voting Rights)

    Messages:
    218
    Carol Monaghan represents SNP at Westminster not Holyrood(Scottish parliament). Didn't ME Action Scotland do some good work recently on ME with the Scottish Government?
     
  13. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Messages:
    3,239
    I thought the Scottish government was on board re the NICE guidelines.

    It appears lobbyists may have intervened.

    Oh yes, I forgot, it's only those "nasty militant pwME", rising up from their beds, and wheelchairs who are lobbyists. ;) :banghead:
     
  14. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    620
    Location:
    Pennsylvania
    Google Translate link: https://www-nrk-no.translate.goog/l...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

    Spoiler because some will find the story upsetting:
    • They spent 15,000 NOK on the treatment in 2008. That's 2,100 USD or 1,350 GBP based on exchange rates from the time.
    • Their son, who was 13 and ill with ME, took the three-day Lightning Process course
    • They told him that if you don't recover, it's your fault
    • Two weeks later, he crashed hard and attempted suicide
    • The LP teacher offered them another course for free, after being told that he tried to kill himself!

    This is direct, rapid, obvious harm caused by BPS. It's not the only form of horrific harm pwME have suffered, but it's clear to non-pwME.
     
    ToneAl, Hutan, Cheshire and 7 others like this.
  15. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    3,444
    Location:
    UK
    I know, but she is well informed on ME, and will likely have good relationships with some colleagues in the Holyrood administration. If she isn't aware of it, I thought she might raise it with them (i.e. ask "WTAF?").

    She might know about it, of course, and may already have rolled her eyes already at whoever agreed the funding.


    ETA: 'Eyes' in last line!
     
    Last edited: Oct 31, 2022
  16. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,821
    Location:
    Cornwall, UK
    Hutan, Amw66, ukxmrv and 5 others like this.
  17. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    443
    Can anyone list the ME organisations dealing with such things?

    I've spoken to CNS neuro charities who have flat-out told me ME/CFS is an FND condition. Then after being told my symptoms, they said I might have been incorrectly diagnosed with FND, but going by the poll about everyone's symptoms, I suffer from the same ones most people have voted for.
     
  18. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    443
    Hutan and Peter Trewhitt like this.
  19. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    443
    Here is a video of Jon Stone discussing FND with medicolegal services.

    https://www.youtube.com/watch?v=oyDEG_xzsxo




    In my opinion, at 12:14 mins what he said sounds like an FND grab for poorly understood neuro conditions.
     
    Sean and Peter Trewhitt like this.
  20. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    2,761
    The latest onslaught of FND began with a paper by Michael Sharpe and Jon Stone in 2008 which was full of caveats on diagnosing it. Since then FND has taken over more and more of medicine until now they claim a "functional overlay" to many (all!) diseases with clear diagnostic tests.

    Stone is still at Edinburgh University though Sharpe has left but I assume they still carry great authority.

    When the Scottish Government were on the verge of adopting the CCC for ME the plans were scuppered by a letter from the head of the Neurology group in Scotland who said neurologists would not accept them. This was Sharpe not revealing he was the one who came up with the diagnostic guideline that was being superseded. Another position of high authority.

    Incidentally there was also a complaint from the Royal College of GP's authored by Gerada who did not mention her connections either.

    These people have got themselves into a position where they can get away with anything because of who they are.
     
    Hutan, Cheshire, Amw66 and 12 others like this.

Share This Page