Thread by @TilmanAndris

Not such good news for #pwME in the Netherlands?

Dutch patients should no longer expect that future Dutch guidance for #MEcfs will be based on the new NICE guideline.

1/

#MEawarenessHour
#MyalgicE #MEcfs #MillionsMissing

In December 2020, the Dutch Care Institute (Zorginstituut Nederland) had announced it would work towards a new "quality standard"/guideline for care for people with #MEcfs. In that announcement it stated that the British NICE guidelines could possibly serve as
2/
#MEawarenessHour

the basis for those guidelines.
(See: zorginstituutnederland.nl/actueel/nieuws…)

3/
#MEawarenessHour

The Dutch guideline should have been completed by 1 October 2021. Both Zorginstituut Nederland and patient organisations were in favour of basing the new guideline on the one by NICE, but it appears this did not meet with consent from other stakeholders.

4/
#MEawarenessHour

Still, an agreement was reached that a new guideline is needed and a new deadline has now been set for completion: 1 May 2023.
Apparently the NICE guideline will still be consulted as part of the evidence review, but so will the old Dutch guideline,

5/
#MEawarenessHour

which recommends CBT and GET.
A list of organisations who will be represented during this process has now also been published:
The Dutch Patient Federation (@PatientenNL), the Dutch Association of Internists,

6/
#MEawarenessHour

the Dutch Association for Insurance Medicine, the Dutch Association for Occupational Medicine, the Dutch Association for Behavioural and Cognitive Therapies, the Dutch Association of General Practitioners,

7/
#MEawarenessHour

the Dutch Association for Psychiatry, Dutch Health Insurers (Zorgverzekeraars Nederland), as well as three patient organisations for ME: Steungroep ME en Arbeidsongeschiktheid (@SteungroepME), ME/cvs Vereniging (@MEcvsVereniging)

8/
#MEawarenessHour

and ME/CVS Stichting (@MECVSSTICHTING).

It seems it was incredible hard to even achieve agreement that a new guideline was needed.

Many thanks to all patient representatives working on this!

9/
#MEawarenessHour

To close, here's the dedicated webpage on the Zorginstituut website:
zorginstituutnederland.nl/werkagenda/mee…

10/10
#MEawarenessHour