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RME

The Swedish National Association for ME Patients (RME) is a politically and religiously independent association of individual members with the aim of improving the situation for patients with the disease Myalgic Encephalomyelitis, ME (diagnosis code WHO-ICD 10: G93.3).

  • Work to see that the disease ME is recognized and acknowledged
  • Work for ME patients’ right to a correct diagnosis, adequate care and full participation/inclusion in the general social insurance system, as well as relief and other support measures
  • Monitor and stimulate research and disseminate research findings and other correct information about the disease
  • Stimulate the exchange of experience, support and community between RME’s members
  • Cooperate with associations sharing the same purpose on a national and international level
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The vision

RME should be the first choice for ME patients, relatives and healthcare personnel when advice, support and information is needed.

RME shall, as a national patient association within the field of ME, work to:

  • Improve the situation for patients so that they are assured good quality of life.
  • Gather and convey qualified knowledge about ME, within biological, psychological, social and existential domains.
  • Update relevant actors such as politicians, public opinion, social insurance systems and care providers about current research on ME/CFS.

RME exists for the patients and our work is based on their needs:

  • In everyday life e.g. with aids, home care assistance, social services and through involved relatives.
  • In healthcare, through specialist clinics and competent primary care.
  • For the future, stable financial support, as well as research.

The strength and hallmark of RME is that we have very good knowledge of the entire ME field. We take great care to stay updated on the latest research. Based on this research, it is the firm view of RME that ME/CFS is a serious, chronic, complex multisystem disease that dramatically limits the level of activity of those affected.

(Source: IOM report)

Existing research does not support the theory that ME/CFS is caused or maintained by erroneous thought patterns. It is also not correct to denote the disease as a functional syndrome or any other psychogenic concept.

We attach great importance to being present among our members for support and advice.
We view the individual as a whole, i.e. biological, psychological and social. As with other life-changing diseases, it is natural to react in different ways, even emotionally, as life is turned upside down physically, work-wise, socially and economically. As long as there is no curative treatment, is it essential that the affected receive good care and access to initiatives that can improve their quality of life in any way possible, despite the disease.

We make sure to stay informed and pick up on all the current issues in society that we need to draw attention to in order to improve the situation for ME patients. In our work, we take advice from experts in different fields.

Four keywords

Safety – RME welcomes everyone who shares our values! Each member is a unique individual, with their own value and responsibility. We respect each other, help each other and take care of each other.

Participation – With us, you are welcome regardless of your ability or knowledge. We make sure that everyone can contribute, each according to their circumstances.

Quality – RME strives to be the best in our field. We supply factual and relevant information to the public and to decision makers.

Responsibility – It is the responsibility of every member that RME is perceived as a serious and reliable organization. Everyone who is assigned a task within the association do their best to carry it out.

Open Medicine Foundation
https://www.omf.ngo/

https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/severely-affected-patients.html

Treatment and management

Diagnosis of ME/CFS: https://www.cdc.gov/me-cfs/symptoms-diagnosis/diagnosis.html

English: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://rme.nu/wp-content/uploads/2018/12/Managingyourenergyenvelope.pdf

English: https://rme.nu/wp-content/uploads/2018/12/Step-by-stepimprovement.pdf

English: https://m.e.awareness.nz/a-guide-to-pacing-for-pwme

English: http://www.viss.nu/Handlaggning/Vardprogram/Nervsystemet-och-smarta/ME-CFS-Kroniskt-trotthetssyndrom/

English: https://rme.nu/wp-content/uploads/2018/12/BHC_ParentsGuide.pdf

English: https://rme.nu/wp-content/uploads/2018/12/fped-05-00121.pdf

English: https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-parents-guardians.html

English: https://rme.nu/wp-content/uploads/2020/10/Geraghty-m-fl-2017-Review-of-KBT-GET-studies.pdf

Norska?: http://www.me-foreningen.info/mestring/de-aller-sykeste/