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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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

Visual symptoms can be functional or dissociative. The following types of symptom are quite common:

Visual blurring
Typically people complain that their vision intermittently goes “blurry” and they have to screw up their eyes to make things come back to normal. Sometimes the vision may even be double. This symptom is often due to “convergence spasm”. This is when one of the eyes is too actively ‘turning in’ towards the nose. Convergence is a normal eye movement but sometimes it becomes hyperactive in people with FND or functional neurological symptoms.
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Light Sensitivity (Photophobia)
This is common in people with chronic fatigue syndrome. It may also occur in people with functional weakness and sensory symptoms.
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https://www.neurosymptoms.org/en_GB/symptoms/fnd-symptoms/visual-symptoms/

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

Fatigue, tiredness and lack of energy is a very common symptom in patients with FND. Typically people with FND experience fatigue that is a lot worse after they have done a very small amount of activity. Either soon after – or sometimes the next day.

Often despite many more obvious symptoms, many people with FND say that it is the exhaustion and fatigue that really holds them back day to day. Several studies have shown that fatigue is the single most important determinant of quality of life for many people with FND.
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Tiredness in this situation can also be thought of as another symptom related to a problem with nervous system functioning.

CFS/ME has been recognised as a genuine illness by National and International Health Organisations around the world

This website is not designed to discuss chronic fatigue syndrome / M.E. in detail.
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yet it then goes on

Stories of recovery from Chronic Fatigue Syndrome (CFS/ME)
Dr Henrik Vogt is a Norwegian general practitioner with a research interest in functional disorders.

CFS/ME describes persistent and disabling fatigue, usually with many other symptoms such as poor concentration. There are many online personal stories and organisations testifying to how horrendous and longlasting CFS/ME can be.

But patients faced with CFS/ME have often found it hard to find stories of recovery from which they might learn.

Dr Vogts website Recovery Norway – www.recoverynorway.org – aims to publishing stories of improvement which may be helpful to some readers of this website to try to redress the balance.
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https://www.neurosymptoms.org/en_GB/symptoms/common-associated-symptoms/fatigue/

Funded by Scottish Government




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.
 
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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:

“Even though treatment of CFS/ME is not within the sphere of responsibilities of NAV (Norwegian Labour and Welfare Administration), loss of function due to the illness is highly visible in the NAV system. The powerlessness of being unable to do anything but observe the suffering, is a burden for many NAV employees. NAV can and should contribute to spreading the testimonials from Recovery Norway to general practitioners”.

Georg Espolin Johnson
Medical doctor in the Norwegian Labour and Welfare Administration
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“Would just like to thank you for a great initiative. When evidence is complicated, why not start at the opposite end? Thank you for braving the storm. I believe this initiative also supports the clinicians who are braving it too”.

Anonymous medical doctor
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“In a world where the media and some organisations monomaniacally persist in their descriptions of the horrible consequences of an illness, it is important that patients that have experienced recovery have a forum in which to put forward that this negative depiction is not necessarily correct. Namely that there is both hope and possibilities for long-term improvement. Recovery Norway is an example of such a positive voice for which we have great need”.

Ulrik Fredrik Malt
Prof.dr.med.
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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)

In order to become a full member of Recovery Norway, one must fulfil one of the following two criteria:

  1. You have had and have recovered from CFS/ME or another so-called “medically unexplained” health problem, for example fibromyalgia, irritable bowel syndrome (IBS), tinnitus (auditory ringing noises). You have to have become well through a method or strategy that broadly involves changes in thinking or behavioural patterns or human interaction (not primarily changes in diet, supplements or pharmaceutical interventions. Neither can you have recovered from alternative therapies that are not compatible with a scientific worldview or model of the body).
  2. You are next of kin to such a person.
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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?
 
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.

NRK.no have asked Bruun Wyller if he has any qualms about sending ME-sick children to LP courses when you know that someone is getting sicker from it, and has even tried to take their own lives.

Wyller declined to comment on individual cases.

"I can see qualms about treatments that are not scientifically documented, as well as have commercial interests such as this course. At the same time, the form of treatment has elements of cognitive behavioural therapy, which we have seen several examples of ME patients benefiting from," he tells NRK.no.
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Andy said:
This website has cropped up a number of times over the years
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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?
 
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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:
 
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bobbler said:
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.
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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.
 
Ebb Tide said:
Carol Monaghan represents SNP at Westminster not Holyrood(Scottish parliament).
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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!
 
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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.
 
Here is a video of Jon Stone discussing FND with medicolegal services.



In my opinion, at 12:14 mins what he said sounds like an FND grab for poorly understood neuro conditions.
 
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.
 
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