Feminister kräver ME-forskning

Den amerikanska feministiska organisationen NOW kräver att kongressen satsar på forskning om ME/CFS. Kan vi hoppas på engagemang från svenska feminister också?

Bristen på vård för och forskning om ME/CFS, fibromyalgi och liknande sjukdomar är i högsta grad en kvinnofråga. Nio av tio fibromyalgisjuka är kvinnor. Bland ME-sjuka är siffran något lägre, runt sex-åtta av tio.

Hur kommer det sig att det är just kvinnors sjukdomar som inte tas på allvar i vården? Där har feminismen och genusvetenskapen ett svar — könsmaktsordningen. Det är inte en tillfällighet att det är kvinnors sjukdomar som ignoreras eller att det i Sverige finns en stark opinion för att stänga alla alternativa möjligheter till vård.

NOW, National Organisation for Women, som är en av världens största feministiska organisationer, har skrivit ett brev till den amerikanska kongressen och begärt att de slutar prioritera bort forskning om ME/CFS. De skriver bland annat så här (vår översättning, se hela brevet på engelska nedan):

”Baserat på information från ME/CFS-patienter och deras supporters som är NOW-medlemmar, begär vår organisation att ni återställer, stärker och accelererar de federala insatserna för biomedicinsk forskning och klinisk utbildning om ME/CFS. Sedan sjukdomen först undersöktes av CDC på 1980-talet har federala myndigheter misslyckats med att genomföra tillräcklig basal forskning och investera i området för att få fram den nödvändiga vetenskapliga förståelsen eller kliniska studier av ME/CFS. Dessutom har den långvariga frånvaron av ME/CFS-forskning tillåtit att sjukdomen blivit stigmatiserad och feltolkad som psykologisk under många år.

Denna brist på intresse, brist på iver, och felaktiga allokeringar av resurser har historiskt sett förekommit i relation till sjukdomar som primärt drabbar kvinnor, och den måste sluta. Vi måste ta igen förlorad tid och ta lämpliga steg för att göra något åt den tunga bördan av denna hemska sjukdom.”

Kvinnosjukdomar är feministiska frågor som borde finnas på den feministiska agendan. Inte bara på grund av den självklara rättigheten att få vård utan för alla de konsekvenser det medför i form av krossad ekonomi och beroende.

Hittills har svenska feminister inte engagerat sig särskilt mycket i vare sig fibromyalgi eller ME/CFS. Endometrios och bristerna inom förlossningsvården väcker engagemang, men de här sjukdomarna drabbar också väldigt många kvinnor. Kan vi hoppas på ett svenskt feministiskt engagemang i det faktum att så många människor, framför allt kvinnor, står utan vård idag? Låt oss göra det. Om feminismen ska vara en rörelse som kämpar för kvinnors, alla kvinnors, rättigheter så är det hög tid att ta sig an de här frågorna.

Läs brevet i sin helhet här:

The Honorable Paul D. Ryan, Speaker of the House, United States House of Representatives, Washington, DC 20515
The Honorable Nancy Pelosi, Minority Leader, United States House of Representatives, Washington, DC 20515
The Honorable Rodney Frelinghuysen, Chair, Appropriations Committee, United States House of Representatives, Washington, DC 20515
The Honorable Nita Lowey, Ranking Member, Appropriations Committee, United States House of Representatives, Washington, DC 20515
The Honorable Tom Cole, Chair, Subcommittee on Labor-HHS-Education Appropriations Committee, United States House of Representatives, Washington, DC 20515
The Honorable Rosa DeLauro, Ranking Member, Subcommittee on Labor-HHSEducation Appropriations Committee, United States House of Representatives, Washington, DC 20515

Dear Speaker Ryan, Minority Leader Pelosi, Chairmen Cole and Frelinghysen and Ranking Members DeLauro and Lowey:

I write you today on Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis to urgently express the National Organization for Women’s support for the restoration of funding and continued investment in research and related programming for Myalgic Encephalomyelitis (ME), historically known as Chronic Fatigue Syndrome (CFS). Currently, the House Subcommittee on Labor-HHS-Education has zeroed out the only line item for ME/CFS research in the Fiscal Year 2018 budget, H.R. 3358.

This cut in ME/CFS research and investment is especially disheartening considering last week’s breakthrough study from Dr. Jose Montoya of Stanford University which could pave the way for a definitive blood test for ME/CFS. Now is not the time to cut ME/CFS research programs.

The National Organization for Women (NOW) is the largest organization of feminist grassroots activists in the United States. NOW has hundreds of chapters and hundreds of thousands of members and supporters in all 50 states and the District of Columbia.

Based on information from ME/CFS patients and their supporters who are NOW members, our organization asks you to restore, strengthen, and accelerate federal efforts in ME/CFS biomedical research and clinical education now. Since the disease was first investigated by the CDC in the 1980s, federal agencies have failed to adequately conduct basic research or invest in the field to enable the necessary scientific understanding or clinical trials of ME/CFS. Furthermore, the extended lapse in the ME/CFS research landscape has allowed the disease to be stigmatized and misrepresented as psychological for many years.

This lack of concern, lack of urgency, and improper allocation of resources has historically occurred in relation to diseases that primarily affect women, and it must end. We need to make up for lost time and take the appropriate strides to address the heavy burden of this horrible disease.

This incredibly debilitating disease destroys the quality of life and livelihood of up to an estimated 2.5 million people in the United States; more than HIV/AIDS and MS combined. ME/CFS costs the U.S. economy between $17 to $24 billion annually. However, as the Institute of Medicine (now the National Academy of Medicine, 1100 H Street, NW, Suite 300  Washington, DC 20005  (202) 628-8669 website: www.now.org  email: now@now.org Academies) notes, there has been “remarkably little research funding” to date to discover its cause or possible treatments. If we were able to find a cure or effective treatment for ME/CFS, it would save the U.S. billions of dollars annually.

We are asking for:

1) The restoration of funding for the Chronic Fatigue Syndrome line item in the CDC’s Center for Emerging and Zoonotic Infectious Diseases, currently funding a CDC multi-site study, medical education initiatives, and investments in the field of ME/CFS biomedical research.
2) The inclusion of ME/CFS as an eligible program area for the Congressional Directed Medical Research Program’s Peer Reviewed Medical Research Program, and
3) Additional language in the FY 18 appropriations process providing guidance to the NIH to increase investment in ME/CFS biomedical research.

A recent study published in the Journal of Medicine and Therapeutics estimated the World Health Organization (WHO) disability adjusted life years (DALY) measurement for ME/CFS and determined that, in comparison to other illnesses, NIH research funding for ME/CFS should be $188 million per year, over 25 times higher than the $7 per patient per year that is currently being allocated by the NIH, who’s recent budget estimates anticipate a $2 million reduction in funding for ME/CFS in FY 18. This is a criminal underfunding of a disease affecting millions of your constituents and it must be rectified.

Additionally, ME/CFS is too prevalent (affecting up to 2.5 million Americans) to qualify for subsidies and government incentives offered to pharmaceutical companies for rare disease research. Yet it is not prevalent enough to represent a large enough market share for private sector investment. ME/CFS research is “lost in the middle” and relies almost entirely on public funding for research investment.

We believe that the higher prevalence of ME/CFS in women is a contributing factor resulting in the stigmatization experienced by patients and the failure of research investment commensurate with the burden of the disease by federal agencies. As you are aware, there is a long, documented history of gender bias in medical research, and ME/CFS is one of many diseases negatively affected by this trend. Terms like ”mass hysteria,” ”conversion disorder,” and ”Raggedy Ann syndrome” belittled patients and clearly undermined the seriousness of this terrible disease, where women are the vast majority of those who suffer.

We urge Congress to seize this opportunity to quickly advance diagnosis, treatment, and a cure for ME/CFS, by restoring and expanding funding in research and education programs at a level commensurate with other similarly burdensome diseases unaffected by stigma or gender bias. Doing so will spur research at a time when many scientists believe that major discoveries are imminent, as well as bring new investigators into the field.

Congress must take urgent and immediate action to reverse the damage of the past and provide renewed hope for millions suffering today.

Thank you for your attention to this critical issue. We look forward to your response.

Sincerely,
Toni Van Pelt
President National Organization for Women

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