Jo Best
Senior Member
- Messages
- 1,032
Original artcle in Norwegian: https://www.aftenposten.no/meninger...mpleks-multisystemsykdom--Ola-Didrik-Saugstad
Google Translate English: https://translate.google.com/transl...isystemsykdom--Ola-Didrik-Saugstad&edit-text=
Comment by Invest in ME Research (founding member of the European ME Alliance):
We were very honoured to have Professor Saugstad and his student Asgeir Lande present at the 8th Invest in ME Biomedical Research into ME Research Colloquium in London in May this year.
We can assure the Norwegian public that international biomedical research into ME is not misleading or outdated – it is just underfunded.
Yet, thanks to funding collected by patients, we are gradually seeing that things are starting to change and we have absolutely no doubt that increased funding of biomedical research into ME will bring the results that people with ME deserve.
We view the LP™ pyramid business to be more quackery – similar to all of the other #junkresearch that has been forced onto vulnerable patients in the UK.
Unregulated, unaccountable and unscientific.
http://investinme.org/IIMER-Statement-1709-01.shtml
The disastrous biopsychosocial approach to treating ME in United Kingdom has totally failed. Totally failed.
And our society is the poorer for the continued waste of life due to this disease being treated by deleterious treatments such as CBT and GET – and now the risible LP.
Norway should certainly not follow the past UK model for treating and researching ME.
The vested interests who have controlled what is funded and how patients are treated by flawed psychiatric ideology are indeed losing ground.
First the PACE Trial has been shown to be totally flawed and unusable with questions even raised in parliament about fraud.
The National Institute for Health and Care Excellence (NICE) have now seen some sense thanks to submissions from charities such as Invest in ME Research to urge them to rethink and they will revise their guidelines – guidelines which patients objected to and then forced a judicial review of them [ http://investinme.org/IIMER-Newslet-17-07-04.shtml ].
Now we see the SMILE trial as an unethical experiment testing a commercial enterprise on children. What a scandal!
And Dr Wyller is indeed wrong if he thinks a small but loud group of ME patients are fighting.
We are a LARGE group of ME patients fighting – and will continue to do so as long as this irrelevant pseudo-science and these failed psychiatric theories about ME are finally discarded by creditable science which will bring benefits to people with ME and their families.
An old adage should be remembered - Listen to the patients.
Thank you, Professor Saugstad.
From UK charity Invest in ME Research
Google Translate English: https://translate.google.com/transl...isystemsykdom--Ola-Didrik-Saugstad&edit-text=
Comment by Invest in ME Research (founding member of the European ME Alliance):
We were very honoured to have Professor Saugstad and his student Asgeir Lande present at the 8th Invest in ME Biomedical Research into ME Research Colloquium in London in May this year.
We can assure the Norwegian public that international biomedical research into ME is not misleading or outdated – it is just underfunded.
Yet, thanks to funding collected by patients, we are gradually seeing that things are starting to change and we have absolutely no doubt that increased funding of biomedical research into ME will bring the results that people with ME deserve.
We view the LP™ pyramid business to be more quackery – similar to all of the other #junkresearch that has been forced onto vulnerable patients in the UK.
Unregulated, unaccountable and unscientific.
http://investinme.org/IIMER-Statement-1709-01.shtml
The disastrous biopsychosocial approach to treating ME in United Kingdom has totally failed. Totally failed.
And our society is the poorer for the continued waste of life due to this disease being treated by deleterious treatments such as CBT and GET – and now the risible LP.
Norway should certainly not follow the past UK model for treating and researching ME.
The vested interests who have controlled what is funded and how patients are treated by flawed psychiatric ideology are indeed losing ground.
First the PACE Trial has been shown to be totally flawed and unusable with questions even raised in parliament about fraud.
The National Institute for Health and Care Excellence (NICE) have now seen some sense thanks to submissions from charities such as Invest in ME Research to urge them to rethink and they will revise their guidelines – guidelines which patients objected to and then forced a judicial review of them [ http://investinme.org/IIMER-Newslet-17-07-04.shtml ].
Now we see the SMILE trial as an unethical experiment testing a commercial enterprise on children. What a scandal!
And Dr Wyller is indeed wrong if he thinks a small but loud group of ME patients are fighting.
We are a LARGE group of ME patients fighting – and will continue to do so as long as this irrelevant pseudo-science and these failed psychiatric theories about ME are finally discarded by creditable science which will bring benefits to people with ME and their families.
An old adage should be remembered - Listen to the patients.
Thank you, Professor Saugstad.
From UK charity Invest in ME Research
