• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Only 126 signatures needed. 8 days until the petition is presented to the Dutch Health Council. Please be one of the 126 signatures to help us reach our goal of 10.000 Would mean a lot. https://meisgeensolk.petities.nl/?locale=en You can sign from any country, anonymous if you want, but just...
  2. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Please keep signing and share on your social media. With your help we can do it. We are down to 289 signatures still needed to reach goal of 10,000 https://meisgeensolk.petities.nl/?locale=en
  3. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Thank you Jo! The clock is ticking! 9 days to go, only 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...
  4. MEisnotMUPS

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

    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...
  5. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    760 signatures still needed to reach 10,000 Would mean a lot for Dutch patients if you could help. thank you https://meisgeensolk.petities.nl/?locale=en
  6. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    970 signatures still needed, keep signing people please, We are nearly there.. https://meisgeensolk.petities.nl/?locale=en
  7. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    thank you for signing, hmmm that is strange, the number just hit 9029, but with another name. Mostly you will see your signature (or if you signed anonymous the number go up) fairly quickly. (you could try from another email address if you have one). thank you for trying !!
  8. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    :thumbsup:
  9. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Thank you all so much! It was great to see it go past 9.000 Now 997 to go. With your help we can do this. So please keep signing and sharing https://meisgeensolk.petities.nl/?locale=en xxx
  10. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    It would mean a lot if you would take 1 minute and be one of the remaining 1004 signatures we need to reach the goal of presenting 10,000 signatures to the Dutch Health Council. https://meisgeensolk.petities.nl/?locale=en This is what Invest in ME wrote about this petition in their July...
  11. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Dear all, Dutch need your help. Please consider signing and sharing. To stop BPS proponents/Dutch PACE colleagues from hijacking ME and rebranding it as MUS, functional somatic syndrom, BDS, SSD or whatever they come up with. The influence of those who BPS proponents is huge. Like in the UK...
  12. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    This petition needs 1139 signatures to reach its goal of 10,000 Please help https://meisgeensolk.petities.nl/?locale=en
  13. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Please help the Dutch, Sign and share Less than 1700 signatures needed to present the Dutch Health Council with 10,000 signatures! https://petities.nl/petitions/me-is-geen-solk-wijzig-gezondheidsraadscommissie-en-houd-u-aan-de-adviesopdracht?locale=en
  14. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Can you please help the Dutch reach 10,000 signatures for their petition. 1794 more signatures needed, just few weeks left. Please don't let ME be rebranded as "MUS" (medically unexplained symptoms), based on a BPS model that has never been proven. Enough is enough, how many more decades...
  15. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    1825 signatures needed to reach 10,000 Please help. The Biopsychosocial model has an influence on care for ME patients in the Netherlands that is hampering all progress. Dutch PACE colleagues insist you can recover with CBT/GET. And are now on Dutch Health Council Committee writing advisory...
  16. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Please help the Dutch reach 10,000 signatures for this petition. Don't let the official diagnosis ME become a non diagnosis MUS/MUPS. (based on unproven BPS model/with ineffective CBT/GET as its main treatments). Patients have waited long enough, we need research, real care, and recognition of...
  17. MEisnotMUPS

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    June 30th PLENARY SESSION 2 "The aetiology of functional somatic syndromes: lumpers, splitters and lifelines" PROF. CREED & PROF. ROSMALEN "How to treat Bodily distress Syndrome / functional somatic syndromes. Results from a highly specialised university clinic" PROF. FINK
  18. MEisnotMUPS

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Please everyone, sign if you can https://meisgeensolk.petities.nl/?locale=en Dutch Health Council (writing advisory report on ME to Parliament) put on its committee Rosmalen (and as Suzy points out, see post above, she is one of the Wessely-school / EAPM/ BPS proponents, has worked for years...
  19. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    we need 2496 signatures to reach 10,000 signatures. Please help stop the reclassification of a serious chronic complex multi-system illness as MUS/MUPS anyone from any country can sign, anonymously if you want, just don't forget to click on the confirmationlink in your email after you sign...
  20. MEisnotMUPS

    Crawley: How to deal with anti-science BRS2017

    This is just horrible..... Pediatric conference today called: "A DAY WITH THE MUPP(ET)S" referring to patients with medically unexplained physical / psychological symptoms Which includes a Crawley talk on CFS. The Trust reacts...
  21. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    Dear all, The Dutch need 2522 signatures to reach 10,000. The petittion closes soon after ME Awareness Month. That means there a only about 2 weeks left. Stop the influence of the BPS model Stop ME being rebranded as the non-exsisting diagnosis "MUS" or "MUPS" (medically unexplained (physical)...
  22. MEisnotMUPS

    NETHERLANDS: ARTISTS TO SHOWCASE THEIR WORK TO RAISE AWARENESS FOR ME

    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...
  23. MEisnotMUPS

    ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

    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...
  24. MEisnotMUPS

    Crawley: How to deal with anti-science BRS2017

  25. MEisnotMUPS

    Crawley: How to deal with anti-science BRS2017

  26. MEisnotMUPS

    Crawley: How to deal with anti-science BRS2017

    Keith posting more pictures from the presentation on twitter. I as a patient and someone with an academic degree find it disgraceful....where has scientific integrity gone...
  27. MEisnotMUPS

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    No exclusions yet under BDD....(which replaces the somatoform and neurasthenia chapters, it is the new "MUS") this is how the wessely school is trying to implement MUS/BDD into health care practice. Based on unproven BPS/Cogn Behav. model, and promoting ineffective CBT/GET treatments...
  28. MEisnotMUPS

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    :-)
  29. MEisnotMUPS

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    New proposal added which seems to support the one submitted by Suzy and Mary Patient organisations can help by registering and "agree" with proposals being made Diseases of the nervous system Detailed Explanation of the Proposal As the Board of the largest international organization of...
  30. MEisnotMUPS

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    wow, that is fantastic work Suzy and Mary, thank you both I do hope many patient organisations will register to leave comments or at least support the proposals made by you