• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Sign the petition and help Dutch patients: "ME is not MUPS"

Messages
77
People if you can, please consider signing this petition. It is so important. http://bit.ly/1T2Aus9
MUPS or MUS is becoming the next big thing with respect to ME or CFS. It will affect all of us. Eventhough there is no evidence base for the biopsychosocial model, nor the treatments MUPS "experts" actively promote, CBT!

Yesterday we found out that 2 members of the Dutch Health Council committee, with task to write advisory report on ME to parliament (in total almost HALF of the committee consists of MUPS experts) not only wrote articles with White and/or Wessely, we knew that, but they are in EURASMUS
So, Judith Rosmalen and Hans Knoop (2 members of the Health council) are direct colleagues with White + Per Fink (yes, the one from Karina!) http://eurasmus.net/

In the Netherlands there is a 1.5 million Euro project funded by health insurers to get ME (MUPS professionals, see ME and CFS as MUPS) patients referred to mental health clinics for CBT. these 2 members of the committee are involved in this project also.

Please if you can help, help and sign the petition. If you can ask others to sign and share this, please do. Dutch patients can really use all the help we can get. The biopsychosocial model does not apply to ME, CBT is no cure ! http://bit.ly/1T2Aus9
 
Messages
77
Today the PACE authors found it relevant to react to a small Dutch University magazine to defend their PACE results... this is getting more crazy by the minute. They reacted to an article / interview last week with Prof. Cohen Tervaert, immunologist/internal medicine specialist, who is currently on the Dutch health Council Committee that is writing an advisory report on ME to Dutch Parliament.
A committee with half of its members BPS proponents, equating ME with MUS, etc.

Guess Chalder, White and Sharpe where not happy with Prof. Cohen Tervaert's comments on PACE last week. this is their response:
http://www.observantonline.nl/Home/...w/articleId/12101/Myth-busting-a-myth-busting

Mind you, this was a Dutch University magazine/in Dutch!!!
How on earth did they feel it was necessary to react to that and perpetuate their false claims about recovery...
Oh wait....their Dutch Pace colleagues/BPS proponents (like Knoop, Rosmalen, Eurasmus buddies for years....https://web.archive.org/web/20160310191845/http://eurasmus.net/) are also on the Dutch Health Council committee writing adivsory report to Dutch Parliament.

if you want to help Dutch Patients, please take a minute sign and help
we need 25 more signatures to reach 7000
https://meisgeensolk.petities.nl/?locale=en
 

Effi

Senior Member
Messages
1,496
Location
Europe
Messages
77
Reaction David Tuller to PACE authors reaction in the Dutch University Magazine


David Tuller
The PACE investigators continue in their refusal to actually address the key concerns raised about their study. First, they continue to refer to this as a "secondary" paper. While it is true that the PACE authors for reasons only they know designated "recovery" as a secondary outcome in the PACE protocol, "recovery" is surely not of secondary importance to patients, so dismissing the paper's significance is this way is unwarranted.

They dismiss the difference in recovery outcomes between their paper and the reanalysis as just a matter of opinion, because the reanalysis used stricter guidelines. They fail to mention that the reanalysis only used the specific criteria the PACE investigators outlined in their own protocol, and then abandoned in favor of ones that allowed them to report statistically significant recovery rates. They received absolutely no approval from oversight committees for this redefinition of recovery.

In their detailed protocol, they included four very clear criteria for recovery. In the paper as published, every one of these four criteria was significantly weakened, in ways documented by Wilshire et al. For two of the four criteria--physical function and fatigue--participants could get worse and yet still meet the "recovery" thresholds because that revised threshold represented worse health than then entry criteria. Thirteen percent of the trial participants met one or both of these "recovery" criteria at baseline.

They have referred to these thresholds as being within the normal range. Yet this is an utterly dishonest argument. They generated their absurdly expansive "normal ranges" by using the wrong calculation to calculate them. They applied the method of finding the normal range for normally distributed populations--the mean plus/minus one standard deviation--and applied it to population samples that they knew were highly skewed in a positive direction. Dr. White himself, in a 2007 paper he co-wrote, had explained how using this method to determine a purported "normal range" for the SF-36 physical function scale yielded distorted findings. This caveat was not included in the Lancet or Psychological Medicine papers.

The authors themselves know that what they are referring to as a "normal range" is not the standard statistical "normal range" that includes two-thirds of the values but a wildly generous "normal range" that includes upwards of 90 percent of all the population values. That's why they ended up with the absurd "normal range" of 60. The same strategy applies to the fatigue normal range--they developed in the same intellectually dishonest way, and yet continue to refer to it as a "normal range." They have never explained why they used the wrong statistical method to develop normal ranges from highly skewed samples. Moreover, Dr. Chalder has never explained why she referred to these absurd "normal ranges" as "getting back to normal" in the Lancet press conference.

They have recently argued, in response to Wilshire et al, that it doesn't matter that some participants were recovered on the physical function or the fatigue outcomes at baseline because there were other recovery criteria. This is truly a bizarre response for researchers to make. It is also a serious violation of the rules of honest scientific inquiry. It is unclear to me why we all have to waste so much intellectual time and energy simply to demonstrate that studies in which participants can be disabled and recovered simultaneously on key indicators should never have been published and, once published, need to be retracted immediately. The PACE authors have no scientific ground to stand on.

http://www.observantonline.nl/Home/...w/articleId/12101/Myth-busting-a-myth-busting
 
Messages
84
Today the PACE authors found it relevant to react to a small Dutch University magazine to defend their PACE results... this is getting more crazy by the minute. They reacted to an article / interview last week with Prof. Cohen Tervaert, immunologist/internal medicine specialist, who is currently on the Dutch health Council Committee that is writing an advisory report on ME to Dutch Parliament.
A committee with half of its members BPS proponents, equating ME with MUS, etc.

Guess Chalder, White and Sharpe where not happy with Prof. Cohen Tervaert's comments on PACE last week. this is their response:
http://www.observantonline.nl/Home/...w/articleId/12101/Myth-busting-a-myth-busting

Mind you, this was a Dutch University magazine/in Dutch!!!
How on earth did they feel it was necessary to react to that and perpetuate their false claims about recovery...
Oh wait....their Dutch Pace colleagues/BPS proponents (like Knoop, Rosmalen, Eurasmus buddies for years....https://web.archive.org/web/20160310191845/http://eurasmus.net/) are also on the Dutch Health Council committee writing adivsory report to Dutch Parliament.

if you want to help Dutch Patients, please take a minute sign and help
we need 25 more signatures to reach 7000
https://meisgeensolk.petities.nl/?locale=en

What the hell '' The results clearly showed that CBT and GET improved both symptoms and disability more than the other two treatments.''

So suddenly self-reported improvement in function and fatigue is equal to reduced disability? This is absurd!!

These morons make my blood boil, at least it looks like the Dutch are making some progress.
 
Last edited:
Messages
77
This Dutch petition will be presented to the Dutch Health council on sept 18th.
The clock is ticking!
9 days to go, 406 signatures needed to reach goal of 10,000 signatures. Please help, sign and share

You can sign anonymous if you want, from any country, just don't forget to click on the confirmationlink in your email after you sign (once you have done that your signature counts)

https://meisgeensolk.petities.nl/?locale=en
 
Messages
471
Via Google Translate:

HANDING OVER PETITION ME IS NOT SOLK TO THE HEALTH COUNCIL AT THE MINISTRY OF VWS THE HAGUE, DATED 18 SEPTEMBER 2017, 15.40-16.10 - A PRELIMINARY REPORT
https://translate.google.com/translate?sl=nl&tl=en&js=y&prev=_t&hl=nl&ie=UTF-8&u=https://mecentraal.wordpress.com/2017/09/19/overhandiging-petitie-me-is-geen-solk-aan-de-gezondheidsraad-18-september-2017-ministerie-van-vws-den-haag-15-40-16-10-uur-een-voorlopig-verslag/&edit-text=&act=url


Original Dutch version:

https://mecentraal.wordpress.com/20...n-haag-15-40-16-10-uur-een-voorlopig-verslag/

OVERHANDIGING PETITIE ME IS GEEN SOLK AAN DE GEZONDHEIDSRAAD OP HET MINISTERIE VAN VWS DEN HAAG, DD 18 SEPTEMBER 2017, 15.40-16.10 UUR – EEN VOORLOPIG VERSLAG
 

Cheshire

Senior Member
Messages
1,129
Is the Dutch Health Council really going to Ignore 10,000 signatures?

More than 10,400 signatures for the Dutch petition ‘ME is not MU(P)S’ (Medically Unexplained (Physical) Symptoms) was presented to Prof. van Gool, president of the Dutch Health Council three weeks ago on September 18th. The petition aims to hold the Dutch Health Council accountable for writing an advisory report to the Dutch Parliament on the state of the scientific knowledge with respect to ME (ICD G93.3). The Dutch Parliament had asked the committee to write the report. (See our earlier reporting about this petition last year).

Among the more than 10,400 signatures were many international ME experts like Dr. Weir, Dr. Booth, Dr. Zeineh, Dr. van Ness, Dr. van Elzakker, A. Whittemore, Dr. Dafoe, Prof. Racaniello, Prof. Coyne, Dr. Goudsmit, Dr. Wilshire etc. Also, “Invest in ME” officially signed the petition. They invited the Dutch Health Council “ME/CFS” committee to attend their biomedical conference this year. The committee had declined in 2016, this year they did not even bother to respond, not even after a reminder.

http://www.meaction.net/2017/10/11/...ncil-really-going-to-ignore-10000-signatures/