Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Norwegian Prime Minister Uses Political Power To Improve The Situation For ME / CFS Patients

Written by Astrid Meyer-Knutsen

In a recent podcast about politics –  The Parliament Restaurant (Stortingsrestauranten) – the Prime Minister of Norway, Erna Solberg was interviewed.

Erna Solberg reflected on being in a position of power, and chose ME / CFS as an example of how she can use that power to be of influence.

On the same day the podcast was recorded, she had participated in the announcement of an allocation from the Norwegian Research Council to four medical studies on ME / CFS.

In the podcast, Prime Minister Solberg says that ME / CFS is a cause she previously worked a lot on before she became a prime minister, while working in the committee for Health and Care Services at the Parliament. According to Solberg, this is a patient group who has been very badly treated in the health care system. She says there has been a lot of arguments about the cause of ME / CFS and what it is, and that a lot of suspicion has been thrown on the patients. For instance, that parents have pathologized their children or that it’s been a psychological problem instead of a physiological. The debate derailed, she claims. Not just in Norway, but in many other countries as well.

Erna Solberg states that as a principle, we should prioritize path-breaking, pioneer research projects. But we must also pursue what society requires – where needs aren’t met. We must do basic scientific research to get answers.

Now the government has been able to prioritize funds for user-identified ME / CFS-research through the Research Council. 30 million NOK has been allocated to research on ME / CFS. This means we can begin to dig into the more difficult aspects and maybe establish more knowledge for the future on why some people get ME / CFS, what ME / CFS really is and how we best can treat it, she continues.

Erna Solberg says this may sound like a nerdy little thing, but really there are hundreds of children lying in their beds at home without going to school and who loose years of their education. There are also a lot of grown-ups lying in dark rooms not really receiving much help or treatment. It is actually a big group who has received far too little attention, she claims. For her, it is rewarding to see that it is possible to move this forward. This is an example of an area where she has used her power as prime minister, she concludes in the podcast.

This is not the first time Erna Solberg speaks on behalf of ME / CFS-patients. Earlier this year a report was released in Norway on how many children were absent from school due to ME / CFS. The report was made from the Prime Minister’s initiative. The report revealed that about 270 primary and secondary students with ME / CFS did not participate in education. There are reasons to believe the numbers are even higher due to lack of reporting. Erna Solberg used this opportunity to raise awareness about ME / CFS in the media and emphasize the need for more research and better care for this patient group.

In 2015, on the international ME / CFS Awareness-day 12th of May, the Prime Minister participated as a guest of honor at an art exhibition arranged by ME / CFS-patients. There she stated on national television:

“It’s actually a scandal. The patients have met a lack of respect simply because we haven’t had knowledge. The worst part is that we haven’t worked that hard to attain that knowledge.”

It is wonderful to see a powerful politician taking an interest in, and prioritizing this long neglected and devastating disease. More awareness and more funds for research are important steps towards a solution. Let’s hope even more politicians and state leaders will join Erna Solberg’s involvement for ME / CFS-patients.

 

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

What are the advantages of giving from your Donor Advised Fund (DAF)?

  • Your gifts to your donor advised fund entitle you to an immediate income tax deduction at the time of contribution.
  • You avoid capital gains tax on appreciated assets you place in your donor advised fund.
  • Your fund’s investment gains accumulate tax free.
  • Funds are distributed to Open Medicine Foundation in your name and immediately put to use to support our worldwide research efforts.

How do I make a donation through my DAF?

Just click on the DAF widget below. It is simple and convenient to find your fund among the over 900 funds in our system.

Still can’t find your fund? 

  • Request a grant distribution through your Donor Advised Fund sponsor
  • Be sure to use OMF’s EIN #26-4712664
  • You can also designate OMF as a beneficiary for your Donor Advised Fund
  • Questions? Give us a call at 650-242-8669 
 

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

###

About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo