USA gir håp!

Hva sier amerikanske helsetopper om Long Covid og ME?

Dette er et redigert utdrag fra innlegget To ulike verdener, som belyste situasjonen i Norge versus USA i perioden 2017 – 2021. Denne versjonen inneholder kun uttalelser om Long Covid og ME fra toppsjefene i National Institute of Health.

Redigert 20/12/21: Dr. Francis Collins, øverste leder i NIH gikk av med pensjon 19/12/21. Embedded tweets fra Dr. Collins har nå navnet til ny leder; Lawrence A. Tabak.

2020

Dr. Anthony Fauci (NIAID)

9. juli 2020Pressekonferanse

«You can see people who have recovered who really don’t get back to normal, that they have things that are highly suggestive of ME/CFS. Brain fog, fatigue and difficulty in concentrating. So this is clearly something we really need to seriously look at, because it very might well be a post-viral syndrome associated with Covid-19.»

Uttalelsen ble dekket av flere medier, deriblant CNN den 9. juli og 10. juli 2020.


17. juli 2020Medscape

We better be careful. Even after you clear the virus, there are postviral symptoms. (…) And it’s extraordinary how many people have a postviral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome. They just don’t get back to normal energy or normal feeling of good health.


Dr. Avinda Nath (NINDS)

17. juli 2020The Scientist

“I think people—agencies, Congress, everybody—should be really focused on the possibility that some COVID-19 patients will develop ME/CFS. They really need to appropriate resources to quickly get into this field, get lots of people interested in studying these patients, and try to get the bottom of it. . . . If you don’t do it, it’ll be a missed opportunity.” 

2021

Rundt årsskiftet bevilget Kongressen 1,15 milliarder USD til forskning på Long Covid (10 milliarder kroner). I februar lanserte NIH et nytt forskningsinitiativ og ga Long Covid det offisielle navnet PASC, som er forkortelsen for «Post Acute Sequelae of SARS-CoV-2.»

NIH har ved flere anledninger uttalt at de tror forskning på Long Covid/PASC også vil kunne øke forståelsen for sykdomsmekanismene bak ME.

NIH/NINDS

Nettside: Coronavirus and the Nervous System

“It is possible that many individuals with ME/CFS, and other disorders impacting the nervous system, may benefit greatly if research on the long-term effects of COVID-19 uncovers the cause of debilitating symptoms including intense fatigue, problems with memory and concentration, and pain.”


Dr. Walter J. Koroshetz (NINDS)

5. februar 2021New resources for large-scale ME/CFS research

«The knowledge gained through research on Long COVID syndrome may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases.»


Dr. Nina Schor (NINDS)

5. februar 20201Working together to understand long-term effects of COVID-19

“This is important because what we learn through research about PACS may help understand, treat, and prevent ME/CFS and potentially other diseases too.”

Finally, studies are being done to identify the mechanisms responsible for this persistent illness and its relationship to prior COVID-19 infection. For example, Dr. Avindra Nath, NINDS’ clinical director, will be studying PACS patients using a protocol similar to that used in the comprehensive NINDS ME/CFS study.  

Through these studies, we hope to identify new targets for therapies and preventive measures and to soon welcome a future in which no one must live with ME/CFS or PACS.


Dr. Francis S. Collins (NIH)

23. februar 2021NIH launches new initiative to study “Long COVID”

“We believe that the insight we gain from this research will also enhance our knowledge of the basic biology of how humans recover from infection, and improve our understanding of other chronic post-viral syndromes and autoimmune diseases, as well as other diseases with similar symptoms.”


Dr. Walter J. Koroshetz (NINDS)

24. februar 2021NINDS supports new initiative to understand long-term symptoms and promote recovery from COVID-19

“In addition, the results from these studies on PASC will teach us about other post-viral infections and diseases with similar symptoms, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).“

Tweets 24/2/21 og 26/2/21. Over 50 pasientgrupper har dannet Long Covid Alliance.

Dr. Anthony Fauci (NIAID)

24. februar 2021 Pressebriefing Det Hvite Hus

Fauci informerer om en ny Covid-19 studie som viser at 30% hadde vedvarende symptomer etter 9 måneder, og sier det er ekstremt viktig å forske på patofysiologisk sammenheng.

Once we get that—and an important part of this would be to design therapeutic approaches, hopefully by medications that we already have. We just need to know how to use them.”

“Experts in all of these areas, cardiovascular, pulmonary, renal, neurologic, immunologic, and pediatrics, [met] to scope out the kinds of things that we would need to be looking at with this puzzling syndrome.”


Dr. Francis Collins (NIH)

01. mars 2021NBC News

«I promise you, we’re all in on this. There will be no stones left unturned. We’re going to figure it out.”


17. mars 2021CNN

«It sounds a lot like Chronic fatigue syndrome, and maybe there’s an overlap here as well. (…) We have to sort all that out and do so as quickly as possible, so that we can both figure out how to prevent this, and also help people who are affected. 


Takk og lov for USA!

Hilsen Sissel



Nettside Long Covid and ME

3 thoughts on “USA gir håp!

  1. Utrolig bra, Sissel! Egentlig kan vi være takknemlige for at biologien vektlegges i USA istedenfor i Norge, med de store forskningsbudsjettene de har der. Hva som skjer her i lille Norge er egentlig ikke så viktig i den store sammenhengen eller i et lengre perspektiv. Når patofysiologien avdekkes etterhvert vil disse funnene vektlegges i langt større grad enn “funnene” fra de biopsykososiales rekker. Biologiske funn er konkrete, replikerbare og falsifiserbare – og kan i større grad brukes til å utvikle behandlingsstrategier. De behandlingsstrategiene som er utviklet av BPS-teoretikerne er jo ikke virksomme, og land etter land snur ryggen til disse utdaterte metodene. “Behandling” som aldri har klart å vise noen skikkelig effekt på objektive endepunkter er ikke godt nok. Vi må ha behandling som faktisk hjelper, og løfter pasientene opp til et nivå hvor de faktisk kan bli yrkesaktive og ressurser i egne og andres liv igjen.

    Alle de viktigste nyere funnene peker nå i retning av at det er i biologien vi vil få de svarene vi trenger for å kunne løse problematikken. Vi får se hvor lang tid det tar før det norske helsevesenet og helsemyndighetene skjønner dette. Og om de på noe tidspunkt vil si unnskyld til de utskjelte “ME-aktivistene” som visst hadde rett hele tiden – det var jo faktisk i biologisk grunnforskning man burde ha prioritert…. Ups!

    Liked by 1 person

    1. Hei SC og takk for innspill. Kanskje den nye, norske, anonyme dokumentaren “ME-skandalen” som er publisert på YouTube i dag, vil fremskynde tiden det tar før myndighetene skjønner de står på feil side av historien?

      Dokumentaren er delt i 2 deler, hver på ca. 1,5 time, og avkler det psykosomatiske miljøet fullstendig.

      Del 1: https://youtu.be/5QggxcOKm18

      Del 2: https://youtu.be/ij5nJIl2-ck

      ANBEFALES! 🙂

      Liked by 1 person

  2. I have just found this article (Jan 2022). I’m in the US. Very sorry to tell you that Collins, Fauci, Nath, Koroshetz have been in charge of research, cure for ME for decades. They are responsible for the gross failure to research and cure ME with our public money.

    Yes, US has the capability–they have shown that with suddenly $2 Billion available AS A START to research Covid/Long Covid. But for decades, we have barely been able to get an allocation of $4Million or $5Million and it was recently increased to $12Million then $15Million for ME research. That’s Million with an “M.”

    Even worse, much of that money has been looted, stolen for other research and then they lied to Congress about stealing the money. There were zero consequences. It continues. Approximately $12Million of the $15-$16Million for this past year was actually directed to ME and the rest taken for other expenses.

    This is in high contrast to about $500 Million annually for HIV/AIDS research (in addition to Billions in private money because they are not ridiculed and lied about and abused by doctors, thanks to Fauci, Collins and company). They have spent more money ‘researching’ teen flavored vape pens and male pattern baldness each year than ME. It’s disgusting.

    The recent comments about ‘benefits for ME’ coming from Covid research, that may turn out to be true in the end: but why should we have to wait longer? Why should we have to wait for all of that to happen first? But that’s exactly what they are doing: taking ME money and SPECIFICALLY EXCLUDING ME PATIENTS from the Covid studies. This is direct from our alleged MECFS specialty group led by Koroshetz.

    They are without a conscience. They don’t give a damn how many lives have been destroyed as long as they get their paychecks. They need to be exposed. If they had been doing their jobs for the last 30 years, not only would I and many others have had decent lives, they probably would have had a cure for Covid ready.

    They need to be exposed. Please contact them and ask for an explanation.

    They said in 2015 they must spend $250Million to jump start research or it would be grossly unjust. They did nothing.

    They did another major report/committees/garbage and repeated this lie in 2019. They did nothing.

    Now they are lying again. THEY NEED TO BE EXPOSED.

    Don’t count on the US.

    Sorry for you and all of us.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s