Petition ME is not MUPS, please take 1 minute to help

[meisnotMUPS]

If you can, please take 1 minute, to sign this very important petition. We need your help!
And your signature CAN make a huge difference, so please sign. (you can sign with your name or anonymous)

https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en
(don't forget to click on the confirmation link in the email you will receive after you sign)

Why it this so important? Because ME is not MUS or MUPS (Medically Unexplained Physical Symptoms). !!!

The Dutch Health Council is about to write an advisory report on the state of the knowledge with respect to ME to Dutch Parliament. However, they have selected 4 MUS/MUPS professionals on their committee (almost half of the committee). Even with all the biomedical research, MUS/MUPS is based on the biopsychosocial model, which has no evidence base yet it is gaining more and more attention in Europe. Psychologists now equate ME, CFS, Fibro, IBS, POTS to a newly formed "diagnosis" MUS/MUPS. Their ideas are based on the Wessely-school ideas and treatments for MUS/MUPS include, ofcourse CBT/GET.
It is not just happening in the Netherlands, in the UK aswell. Health insurers are getting involved to reduce health care spending (by referring ME patients to mental health care institutions to receive CBT). In the Netherlands a 1.5 million MUS/MUPS project in currently being implemented nation wide. Two of the Dutch Health Council ME committee members are project leaders of this project. Another committee member wrote a MUPS guideline for GPs in which ME is equated with a undifferentiated somatoform disorder !

2 of these professionals on the commitee have close ties with PACE authors. They wrote articles with White and Wessely. They are part of Eurasmus, a European http://eurasmus.net/ which again includes Creed, White and Per Fink! (Karina Hansen!).

Please add your voice to stop this. ME is not MUPS. We cannot wait another decade for change! The biopsychosocial model has no evidence base, CBT is no Cure.

Please help https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

 

[meisnotMUPS]

Don't forget to sign, please help if you can, it is so important, will take just one minute, yet it will make a difference.

ME is not MUPS, somatoform Disorder, functional syndrome etc. The old Wessely school paradigms are being re-used by MUPS/MUS psychologists everywhere. This is hampering progress. And we need change!
Not care based on a biopsychosocial model which has no evidence base...and more CBT referrals, which are no cure, this just adds to the stigma and false paradigm about this disease. And is getting us nowhere. If we don't let ourselves be heard, nothing will change. So please add your voice by signing.

)don't forget to click on the confirmation link in the email you will receive after you sign), You can sign with your name or anonymous.

https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

Thank you!!

 

[meisnotMUPS]

Don't forget to sign, we soooooo need the help. The biopsychosocial paradigm still has a huge influence in the Netherlands (as it has now on a Dutch Health Council Committee that is about to write an advisory report on ME !! to Dutch Parliament, 4 MUS members have very close ties with PACE authors, White, Wessely and Per Fink (Karina!).

https://petities.nl/petitions/me-is...n-houd-u-aan-de-adviesopdracht/edit?locale=en

Please help stop the use of invalidated / unfounded hypothesis of this bipsychosocial model and its treatments (CGT/GET), it cannot continue to be the basis of care for ME patients in the Netherlands and elsewhere. (just take a look at http://eapm2016.com/sessions/)

E. Chronic fatigue syndrome: an update on mechanisms and implications for treatment

Chair: Simon Wessely
Authors Title
Megan Roerink Is postural orthostatic tachycardia a useful diagnostic marker in chronic fatigue syndrome patients?
S Fischer, J Strahler, C Markert, MB Kappert, U Nater Psychoendocrine alterations in individuals with chronic fatigue syndrome
R Strawbridge, M-L Sartor, AH Young, AJ Cleare Is chronic fatigue syndrome an inflammatory disorder?
S Kempke Personality and chronic fatigue syndrome: a biopsychosocial perspective

E. Chronic fatigue syndrome

Chairs: Bernd Löwe, Peter White
Authors Title
ML Joustra, I Minovic, KAM Janssens, SJL Bakker, JGM Rosmalen Vitamin and mineral status in chronic fatigue syndrome and fibromyalgia syndrome: a systematic review and meta-analysis
TE Williams, L Pangiotopoulou, T Chalder, M Sharpe, PD White Is chronic fatigue syndrome heterogeneous? A review of the literature and new study of the lumping versus splitting debate for functional somatic syndromes
LV Clark, P McCrone, D Ridge, A Cheshire, M Vergara-Williamson, F Pesola, et al. Graded Exercise Therapy guided Self-hElp Treatment (GETSET) for patients with chronic fatigue syndrome: a randomised controlled trial in secondary care
Anna Cheshire, D Ridge, L Clark, P White Why patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis improve or deteriorate with graded exercise therapy


We cannot wait another decade for change. ME is not MUS, MUPS, somatoform disorder or functional somatic syndrome, or whatever term psychologists come up with, CBT is not cure/treatment.

Please sign (with your name or anonymous): https://petities.nl/petitions/me-is...n-houd-u-aan-de-adviesopdracht/edit?locale=en

(don't forget to click on the confirmation link in the email you receive after you sign) Thank you!!

 

[meisnotMUPS]

This is really important to ME. Please Help!! take a minute to help and Sign https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

Care for ME patients cannot be based on invalidated hypothesis and biopsychosocial models of psychologists. Medically Unexplained Sympotoms, functional somatic syndromes, somatoform syndromes all gaining ground in Europe, based on ideas of the PACE psychologists.
Now not only ME and CFS are considered MUS, functional somatic syndromes, Fibro, IBS, Lyme, POTS......
It is not just the netherlands it is the UK and other contries aswell.

Please I cannot stress enough how important this is. Give a voice to ME, ME is not MUS. CBT/GET is not an evidence based treatment. MUS/MUPS psychologists go round and claim this still every day.

See for example: https://clinicaltrials.gov/ct2/show/study/NCT02426788?show_desc=Y#desc

and Chalders presentations about MUS/MUPS http://slideplayer.com/slide/7335352/

 

[meisnotMUPS]

Just wanted to share this very special birthday wish from Ingrid on her facebook page, ill with ME for many years.

https://www.facebook.com/ingrid.glaser1/posts/10153584486676408?pnref=story

Its her birthday today, and yesterday she asked not to get birthday messages or presents this year, but all she wanted was that as many people as possible would share her fB message and sign the Dutch petition (and ask their friends on facebook to do the same), a petition that is so important for her and other ME patients.

Let's give Ingrid the greatest birthday ever!

https://www.facebook.com/ingrid.glaser1/posts/10153584486676408?pnref=story

 

[meisnotMUPS]

If you can, please sign this very important petition.
https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

The Dutch are in a truely horrible situation. The Dutch Health Council, asked by Dutch Parliament, to write an advisory report on the state of the scientific knowledge about ME, selects a committee with half of its members who have been colleagues with PACE authors, Wessely, Creed, Per Fink (Karina!!) for years. Dutch patient organizations raised serious concerns about conflicts of interest and not adhering to the advisory report assignment (about ME! ICD G 93.3). The Dutch Health Council until now ignores it. These committee members in question clearly follow the wessely-school thinking/paradigm about ME as MUPS (medically unexplained physical symptoms); based on which they classify ME or CFS as functional somatic syndrome or undifferentiated somatoform disorder etc. in need of CBT/GET.

Please Help. Sign and share if you can: https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

Many ME experts signed (A. Whittemore, dr. Weir, Dr. Zeineh, Prof. Racaniello, dr. vanNess, dr. van Elzakker, Prof. Coyne, Janet Dafoe). please add your signature today. No more influence of old/unproven paradigms in health care policy / treatment recommendations for ME. CBT/GET is not an evidence based treatment, the biopsychosocial model does NOT apply tot ME, ME is a serious chronic multi-system disease. Putting professionals on an advisory committee who claim otherwise is unacceptable. Your help is appreciated.

 

[meisnotMUPS]

This Dutch petition can still use your help. https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

Please consider signing (will take just one minute, you can sign anonymous, and from all over the world, but don't forget to click on the confirmation link in your email after you sign). It will help so many.

Please help us send a clear message to the Dutch Health Council (currently writing an advisory report on state of the scientific knowledge aboutt ME), that it is unacceptable to have more than half of its committee members be proponents of the disproven (bio)psychosocial hypothesis, with vested interests in CBT/GET, still claiming these therapies are evidence based, can do no harm and are effective....
The other members on the committee are not ME experts at all, the Dutch health council refused to include international experts (several of which had already said they would be willing to participate/give advice before this committee was formed) yet chose BPS/CBT/GET proponents instead who are on record saying that CFS is a undifferentiated somatoform disorder....

Remember, the Dutch were the ones that provided (one of) the CBT protocols for PACE, Bleijenberg and Knoop (the latter now on the committee) wrote the famous PACE commentary "where to pace from here" which included false claims about recovery, The Dutch in the past did several CBT studies with Children, some of which are now being repeated (with the Dutch) in the UK (lFITNET).
David Tuller recently wrote about the Dutch influence and their flawed studies in his blogs. http://www.virology.ws/2016/12/02/t...ch-studies-again-and-an-esther-crawley-bonus/

"Wow, the research from the CBT/GET crowd in The Netherlands never ceases to amaze. Like the work of their friends in the U.K., each study comes up with new ways to be bad. It’s almost too easy to poke holes in these things. And yet the investigators appear unable to restrain themselves from making extremely generous over-interpretations of their findings–interpretations that cannot withstand serious scrutiny. The investigators always conclude, no matter what, that cognitive and/or behavioral therapies are effective for treating the disease they usually call chronic fatigue syndrome."

Please sign:

https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

 

[meisnotMUPS]

The Dutch still need your help with this petition. https://meisgeensolk.petities.nl/?locale=en

Change unfortunately doesn not happen on its own. We need YOUR help.
Anyone can sign from any country. Please take one minute to do so (you can sign with your name or anonymous, but please don't forget to click on the confirmationlink in your email after you sign)
It would mean so much.

Please don't let ME be rebranded into "MUS"...it is not just a Dutch problemen, it is happening everywhere.
It is the Wessely-school with their European friends that are trying to push a non-diagnosis (hijacking people with an official diagnosis and rebranding it as MUS (Functional somatic syndrome, Bodily Distress syndrome), pushing non-evidence based hypothesis (BPS model) and treatments (CBT/GET) that should have no place in health care for ME.

We have a Dutch health council committee writing an advisory report on ME to Parliament, majority of members are BPS proponents/Dutch PACE colleagues......with MUS / CBT/GET background....(one, Knoop, is involved in UK FITNET Study)

https://meisgeensolk.petities.nl/?locale=en

if you can please share this link on your social media and ask followers to help
Our goal is 10000 signatures, we have one month to go, less than 2900 needed.

 

[meisnotMUPS]

Anil van der Zee, a Dutch ME patient with Severe ME, and a former prof dancer, has created a beautiful ME Awareness project. You can watch him dance here before he got sick:

Anil has asked friends, former colleagues and fellow artists to help raise awareness! And they are !! See for example this moving video from a former dancer and friend of Anil

She says: Inspiration for this video was the thought: What would I miss about my live if I was very sick, isolated and alone.The people I love, places I go to, music and dance.Some parts I dance without music to emphasise the loneliness in silence.

https://www.facebook.com/video.php?v=1328328330583573

Anil asks people to join his ME Awareness movement. What can you do?

1. He asks everyone to sign the Dutch petition and share it so that we can be heard https://meisgeensolk.petities.nl/?locale=en
Guys we need 2700 more signatures to reach 10,000, please sign and share !!

2. Watch all the moving video's and creative projects from Anil's friends that are raising awareness for ME on the special FB page: https://www.facebook.com/undauerMEArt2cureME/?fref=ts

3. Join !! read here how: http://anilvanderzee.com/undauer-eng/