Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

https://twitter.com/user/status/1051843812014940162

https://twitter.com/user/status/1052127469355130880

https://twitter.com/user/status/1052529600473907201

 

Oops, sorry, should have looked for myself.

 

https://twitter.com/user/status/1052093793212751873


"FYI: Recovery Norway @RecoveryNor was founded as a formal organization Jan 2018. We launched our public as a network Sept 2017. But its inception with the recruitment of the first members occurred on Feb/Mar 2017. When we wrote the features we were already becoming about 70 I think."

If Vogt is really angry about people describing those who were members when the network was formally founded as 'founding members', then that's a pretty weak point.

 

I think he's mostly angry about the insinuations that RN was established as a way to get around the stricter marketing restrictions of alternative treatments - july 2017.

And I think he might be right.

The new marketing restrictions might just be an unlucky (for him) coincidence. If he really started to work on his idea and the recruitment of members feb/march 2017.

Still, it should be obvious to him, and everyone else, that the LP-community saw the marketing possibilities of having such a network - giving them a platform to both do marketing and lobbying under disguise of patient organisation, and jumped right on board.

 

Replying to myself to add that, Vogt also has a history of focusing on those who got well and LP, predating the stricter marketing restrictions on alternative treatments. This quote for instance, is from his blog august 2016:

https://henrikvogt.com/2016/08/31/cfsme-listen-to-those-who-got-well/

 

I'd like to sign, too! Maybe a thread of its own would raise attention of more people?

 

Re: listen to those who got well...
Good idea! Listen carefully if they fulfilled the criteria for ME, if they have had PEM, or something else entirely.

 

Once I'm up for it and have secured a card I'll set it up! Just got hit over the head with a benefit related obligatory medical appointment after moving to a new county so it will be a day or two

 

No rush, @andypants! And good luck with that appointment... May the force be with you!

 

Excellent! Thank you, Andy!

 

Signert!

 

Takk!

made me smile

 

4,975 have now signed.

Original link to petition in Norwegian, https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here, https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/

 

5 000 signatures

and keep them coming!​

 

and the mighty Thor #skoll

(been watching too much Vikings)

 

I'll need it! Apparently they've done their famous magic trick where they just decide that my previous doctor isn't reliable and overrule all previous decisions based on her recommendations

Anyway, Nina (who started the petition) has now said she has 3 more blogposts planned before sending the petition. She has a strategy on how to maximize impact and asks everyone to be patient and keep the signatures coming

 

New blog post from Nina Steinkopf, the initiator of this petition.

She is asking patients and carers to tell their stories about what the consequences are from having a Competence Service with a biopsychosocial approach to ME. What are the experiences among patients on meetings with doctors, hospitals, psychologists, rehabilitation, nursing homes, the Labour and Welfare organisation etc? What kind of advice was given, and what were the consequences? It is ok to be anonymous, and she asks that nothing is written that can identify patients, health care personell or others. Some of the stories might be used as additional information when the petition is handed over to the authorities.

Det er vi som må leve med konsekvensene
google translation: We are the ones who have to live with the consequences

5 029 people have signed the petition by now.

Original link to petition in Norwegian, https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here, https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/
(Thank you @Andy for this presentation of links to the petition in Norwegian and English. From now on I'll copy it in my posts in this thread, so they're easy to find)

 

New blog post from initiator Nina E. Steinkopf.
This time with an overview of surveys and research supporting patients' claims that exercise makes us worse. She asks whether it really is the patients' task to gather this research, shouldn't it be the Competence Service's job?

Forskning som støtter det ME-pasienter rapporterer
google translation: Research supporting what ME patients reports

The petition now has 5 097 signatures

Original link to petition in Norwegian https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/

 

Oh, that's good!