Solve ME/CFS Initiative
@PlzSolveCFS
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Making ME/CFS, Long Covid & post-infection diseases widely understood, diagnosable, & treatable. #SolveME #MECFS #LongCovid Donate @
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Joined August 2009
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Pinned Tweet
Our Bid for Hope online auction is live! Items include a meet & greet w/ Olympic Gold Medalist
@PHShriver
& tix to the
@usopen
in NYC this summer, a Zoom w/
@meghanor
& copy of her bestseller "The Invisible Kingdom: Reimagining Chronic Illness." Bid here:
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Thank you to all of the scientists and researchers dedicated to making
#MECFS
,
#LongCovid
, and other post-infection diseases better understood. Check out these new publications, listed below:
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.
@Yale
immunologist Akiko Iwasaki (
@VirusesImmunity
) is investigating whether Pfizer’s antiviral drug, Paxlovid, can help treat
#LongCovid
symptoms. This research could also shed light on other long-overlooked chronic illnesses, she shares with
@WIRED
.
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A recent article by Jeff Wise (
@ManvBrain
) in
@NYMag
was a disturbing misrepresentation of the science around
#MECFS
and other post-viral conditions. It disregarded decades of evidenced-based research and minimized the experience of our communities.
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We’re excited to share the newest class of Ramsay Researchers! Our grant program has successfully attracted new scientists to the field of
#MECFS
and
#LongCovid
since 2016, & providing funding for researchers to engage w/ the science of the disease and build pilot data.
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Thank you to all of the scientists and researchers dedicated to making
#MECFS
,
#LongCovid
, and other post-infection diseases better understood. For
#MEAwarenessHour
, we’ve compiled several new ME/CFS publications, linked below:
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We were encouraged to learn that
@harvardmed
recently expanded the name and mandate of its
#LongCovid
research group to include the study of other post-infection diseases bc of shared mechanisms w/ diseases like
#MECFS
,
#EBV
, and
#Lyme
.
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Last month, Solve M.E. received the extraordinary gift of over $3,000,000! Tom, a real estate investor from Canada, connected with our organization after learning about us from his daughter, who suffers from
#MECFS
.
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Congratulations to
@RobWust
and co-authors on the publication of this new study in
@NatureComms
. Solve is proud to support this important work with funding from our Ramsay Research Grant program.
#LongCovid
After a long wait, our longitudinal long COVID study is finally published in
@NatureComms
: . We find a skeletal muscle alterations in patients with
#longcovid
, which worsen with exercise. 1/n
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6K
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Individuals
#MECFS
&
#LongCovid
can use a heart rate monitor to prevent post-exertional malaise, or
#PEM
. This resource provides a detailed guide to calculating anaerobic threshold (when cells run out of adequate oxygen & switch to using glucose to create energy, triggering PEM):
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We're excited to announce that Solve M.E. and our Solve Long Covid Initiative created a new PSA campaign in collaboration with the
@EIFoundation
entitled “How Long?”. Please help this
#LongCovid
PSA go viral!
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Today, Solve M.E. warmly welcomes 49 new partners in the fight to return millions of Americans to health. The Long COVID Alliance, launched by
@PlzSolveCFS
, is a network of patient-advocates, scientists, disease and public health experts, and drug developers.
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Thank you to all of the scientists and researchers dedicated to making
#MECFS
,
#LongCovid
, and other post-infection diseases better understood. For
#MEAwarenessHour
, we’ve compiled several new ME/CFS publications, linked below:
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Thank you to all of the scientists and researchers dedicated to making
#MECFS
,
#LongCovid
, and other post-infection diseases better understood. For
#MEAwarenessHour
, we’ve compiled several new ME/CFS research studies, linked below:
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Jarred Younger (PhD), Director of the Neuroinflammation, Pain and Fatigue Lab
@UABNews
received $2.9 million in funding from the
@NIH
to complete a brain imaging study over the next five years.
@MECFSNews
@MeCfsToday
#MECFS
#PwME
#MyalgicE
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The article published in
@NYMag
on Nov 4, 2022, “Has Long COVID Always Existed? The pandemic might not have spawned a new chronic illness but rebranded an old one,” was a disappointing step back 30 years to a time when the science of post-viral conditions was young.
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Solve is beginning one of our most ambitious advocacy projects to date — one which could alter the research landscape for
#MECFS
,
#LongCovid
, & infection-associated chronic illnesses. We’re calling for the creation of a new, dedicated office
@NIH
.
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We’re thrilled to announce that our Solve M.E. Advocacy Week kickoff event will take place on Monday, April 19, at 10 am PT/ 1 PM ET, featuring a virtual keynote address by our community champion,
@RepRaskin
(D-MD).
#MECFS
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We were disappointed and concerned by a piece published in
@PsychToday
titled, “When the Body Speaks” by
@roygrinker
. Despite tens of thousands of published papers demonstrating the biological underpinnings of ME/CFS, some still push the outdated notion of "deconditioning."
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Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases (ICD-10-CM).
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Thank you to all of the scientists and researchers dedicated to making
#MECFS
,
#LongCovid
, and other post-infection diseases better understood. For
#MEAwarenessHour
, we’ve compiled several new ME/CFS publications, linked below:
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This year's Advocacy Week kicked off with our Welcome and Virtual Keynote Address from
#MECFS
Champion
@RepRaskin
. Thank you for being part of our efforts to
#StopTheLongHaul
!
@PlzSolveCFS
@Long_COVID_All
#TrustPatients
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In a landmark
#LongCovid
study that included over 700,000 participants, researchers at the
@uniofleicester
found that 45% of study participants had at least one lingering symptom four months after a
#COVID19
infection.
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Our president and CEO,
@SMCICarol
sent this rebuttal to a negative depiction of the
#MECFS
community in
@Forbes
.
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Study Alert: The
@NIH
is supporting a
@IcahnMountSinai
study examining why
#PEM
occurs in patients w/
#MECFS
using cardiac stress tests. Reimbursement for time and travel will be available. If you are interested in participating in this study, please contact 212-844-6665.
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The recording of "How We Can See ME/CFS Inflammation In The Brain" is now available! Thank you Dr. Jarred Younger for joining us to share updates on this important research, as well as what is needed to improve
#MECFS
treatment. Watch here:
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Join Solve and
@Interdependence
Thursday, Jan. 6 for a presentation by Dr. Amy Proal (
@microbeminded2
) — the first in a webinar series exploring the pandemic's long-term healthcare, policy, & economic impact. Register:
#Covid19
#LongCovid
#SolveLongCovid
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Send us the research teams, labs, and projects that you think will find answers for
#MECFS
and
#LongCOVID
. Tag them and us! We'll review all of your suggestions as part of our recommendations to
@NIH
.
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Prelim brain imaging data from
@MBVanElzakker
showing reduced metabolites after an exercise challenge. He hypothesized this might indicate reduction in blood flow (hypoperfusion), which could explain neuroinflammation seen in
#ME
patients
#IIMEC14
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A new startup company is exploring drug options for
#MECFS
based on hypotheses that sodium overload in muscle cells was causing energy problems & exercise intolerance in ME/CFS.
Solve M.E. proudly supported earlier work from Dr. Scheibenbogen as one of our
#RamsayResearchers
!
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Thank you to all of the scientists and researchers dedicated to making
#MECFS
,
#LongCovid
, and other post-infection diseases better understood. For
#MEAwarenessHour
, we’ve compiled several new publications, linked below:
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Solve M.E. is pleased to announce that Emily Taylor, VP of Advocacy & Engagement, has been appointed President and CEO. Emily has been a key member of our leadership team for over 8 years, playing a critical role in securing $1.25B RECOVER
@NIH
funding for
#LongCovid
research.
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After 3 years of hard work & over 10,000 community emails to Congress, we are proud to announce that Solve M.E. helped secure over $547,000 in new federal ME/CFS research funding from the Defense Department!
#ChronicFatigueSyndrome
#MyalgicEncephalomyelitis
#MECFS
#MEAwareness
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20
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Through our Long Haul Voices video series, we're amplifying the voices of prominent medical professionals and scientists who are committed to changing how their professions treat those with invisible illnesses.
#LongCovid
#MECFS
#MEAwareness
#MEAwarenessHour
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Solve M.E. is pleased to announce 7 research studies funded by the Ramsay Program in 2019. Welcome to the 30+ investigators and collaborators who will help grow ME/CFS research over the next year! To learn more and meet the researchers, visit:
#RamsayGrant
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Dr. Rowe
@HopkinsMedicine
published a case series in 2018 on 3 ppl w/ severe ME who had a resolution of symptoms after cervical spine decompression surgery. These & the recent experience of
@JenBrea
speak to the complexity of
#MECFS
& need for
#subtyping
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Last week, the Wall Street Journal published an op-ed by a psychiatry resident who falsely claims Long COVID & ME/CFS were invented by patient activists and are merely manifestations of mental illness.
(Thread 1/5)
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"There's a condition called myalgic encephalomyelitis/chronic fatigue syndrome (
#MECFS
) that looks almost identical to what we're seeing and these have existed for decades"
@NINDSdirector
Dr. Walter Koroshetz says of
#LongCovid
on today's
@FaceTheNation
.
Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke and co-chair of the NIH's long COVID initiative, says there is yet to be a “magic bullet or cure” for long COVID because “we don't understand what's driving it biologically.”
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A new study reports that Hyperbaric Oxygen Therapy (HBOT) improves neurocognitive functions and symptoms of
#LongCovid
. Previous studies showed HBOT to improve brain injuries such as stroke, and even in some other diseases such as
#MECFS
and
#fibromyalgia
.
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Millions of people across the globe are suffering from
#LongCovid
. Watch our PSA and learn how you can help our
#SolveLongCovid
Initiative increase awareness and drive research at .
#HowLong
?
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Solve M.E.'s Emily Taylor recently attended
@MEActNet
's
#MillionsMissing
protest in DC, inspired by her mother Stephanie’s decades long battle with
#MECFS
.
“She said she wished she could have joined me. And that’s why I did it, because she was too sick to be there.”
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"With
#COVID19
unfortunately, we are seeing a cluster of symptoms in people that persist even after the lung infection appears resolved and those symptom clusters overlap considerably, sometimes identical, to people with
#MECFS
," said Dr. Walter Koroshetz,
@NINDSdirector
...
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"The similarities between long-haul Covid-19 and ME/CFS are stunning," writes Denise Ready for
@WSJ
. "Perhaps the sheer volume of the cases of Covid long-haulers will shed a light on ME/CFS, which is a much-ignored condition."
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Thanks to your advocacy efforts, the COVID-19 Long Haulers Act (H.R. 2754) was formally introduced before Congress! Announced by
@RepDonBeyer
&
@RepJackBergman
at a bipartisan press conference hosted by Solve M.E., this bill is the best opportunity for
#MECFS
in decades.
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$93M in proposed funding for
#MECFS
and
#LongCOVID
research! Thank you
@RepDonBeyer
and
@JackBergman_MI1
for your leadership.
#StopTheLongHaul
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A recent study from
@MountSinaiNYC
found that 46% of
#PASC
(or
#LongCOVID
) patients studied met criteria for
#MECFS
. These estimates could indicate an explosion of
#MECFS
cases as
#COVID19
continues to evolve.
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Congratulations to Dr. Liisa Selin, one of our Ramsay researchers, who was awarded $2.5 million for
#MECFS
research with Dr. Anna Gil
@UMassMedical
#WomenInSTEM
#WomensHistoryMonth2021
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27
87
Dr. Hng is a British physician with
#MECFS
who launched
@DoctorsWithME
— a global professional association of medical practitioners, scientists & researchers with
#MECFS
. Read her story at .
#MEAwareness
#MEAwarenessHour
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We are also disappointed by the misrepresentation of information provided by Solve M.E.’s Emily Taylor and other leading experts. This was irresponsible journalism.
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"Inflammatory responses in
#MECFS
patients go down when they should go up. It's like opposite land." - Dr. Nancy Klimas
#DiscoverMECFS17
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This
#WorldMEDay
, we're raising awareness of the hallmark symptom of
#MECFS
: post-exertional malaise, or
#PEM
.
Activity Management, also called
#Pacing
, is critical to navigating life with PEM. Find resources for managing PEM on our website here:
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Congratulations to
@BhupeshPrusty
, one of our Ramsay Grant winners, who recently announced new grants to study ME/CFS and long COVID!
#MECFS
#chronicillness
#LongCovid
1. To bridge the knowledge gap between LongCovid and ME/CFS, we have acquired 2 grants worth almost 1 million Euro. Two new projects employing world class, state-of-the-art single cell RNA & protein biology will soon kick start in our group. Thanks to all of you for your support.
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A landmark study published in
@ScienceMagazine
found Epstein-Barr virus (
#EBV
) as the leading cause of Multiple Sclerosis (
#MS
). Given the already-established connection between EBV and
#MECFS
, this study may have implications for the basic understanding of these diseases.
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“T-cells from
#MECFS
are using significantly less respiratory capacity. But, we don’t know why.” -
@DrMaureenHanson
#DiscoverMECFS17
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Four Years of Advocacy has paid off! We’re Proud to have Authored and Initiated the First Ever Legislation for ME/CFS Research Funding, H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act.
#Covid19
#MECFS
#CongressFight4ME
Read more here:
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Immuno-pharma company
@AimImmuno
announces investigational drug
#Ampligen
will get a rare second chance for clinical trials. Building on decades of advocacy from the
#MECFS
community,
#LongCovid
reopened the opportunity for use of this therapy in the US.
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The
#MECFS
funding was restored in the federal budget compromise announced today. This included our committee report language for NIH, CDC, and HHS. There was also a $2 billion increase for NIH. Great job everyone and thank you for standing with us! (PDF)
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Solve remains committed to advocating for the
#MECFS
,
#LongCovid
and post-infection disease communities and advancing the search for treatments and cures for these very real diseases. Stay tuned for more on this issue.
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How can I tell the difference between symptoms of ME/CFS, COVID-19, or Flu/Common Cold? We’ve created a chart to help! Read more at .
#ChronicIllness
#ChronicFatigue
#MECFS
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Join the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, or IACFS/ME, for a virtual scientific conference August 19-21, 2021 focusing on
#MECFS
and related conditions (e.g. fibromyalgia, orthostatic intolerance, mast cell activation syndrome).
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23
81
The
#TREATLongCOVIDAct
was reintroduced! This much-needed legislation will help expand Long Covid Clinics. In partnership with community advocates, the bill text was adjusted to prioritize funding for entities engaging Long Covid patient organizations.
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79
Join us in flooding social media today with our message to
#StopTheLongHaul
! Use our online social media toolkit to download graphics and share language about our efforts with your networks. We're posting at 12PM PT to align with
#MEAwarenessHour
.
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This year's theme for
#WorldMEDay
centers around
#PEM
.
@WorldMEAlliance
co-chair and Solve M.E. CEO Oved Amitay notes, “To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”
#WorldMEDay
#LearnFromME
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Thank you to all of the scientists and researchers dedicated to making
#MECFS
,
#LongCovid
, and other post-infection diseases better understood. For
#MEAwarenessHour
, we’ve compiled several new publications, linked below:
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77
One of the most devastating parts of having an
#invisibleillness
is how long is takes to achieve a diagnosis. An alarming percentage of individuals with ME/CFS—up to 91%—are underdiagnosed or misdiagnosed. How long did it take you?
#InvisibleDisabilitiesWeek
#SolveMECFS
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We are surprised and troubled by the misrepresentation of information provided by Emily Taylor
@PlzSolveCFS
, Dr
@mhornig
,
@LBatemanMD
, the work of
@davidtuller1
, & the complete absence of existing science. We have contacted
@NYMag
and called for a retraction of the article.
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We are excited to share that Solve M.E. was awarded a grant from
@cziscience
to support patient engagement in
#LongCovid
research, bridging disease disparities, research, & patient needs. This program will build on decades of patient support & advocacy with the
#MECFS
community.
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Our first group of advocates is off to meet their Senators! If you’d like to advocate virtually, visit .
#StopTheLongHaul
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13
76
.
@DrMaureenHanson
from
@Cornell
eloquently put out a call to Dr. Francis Collins and
@NIH
to follow-up on his promise from 2015 – “no action, no hope; I’d like to see that action”
#MECFSatNIH19
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"A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH,"co-authored by Solve CEO Emily Taylor,
@r_prior
&
@DystopianSpiral
, highlights the financial burden caused by IACCIs & the lack of appropriate
@NIH
funding to address it.
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The
@BatemanHorne
is studying participating in one of the only
#LongCOVID
and
#MECFS
integrated medical research & clinical care programs in the country. Learn more about the
@NIH
-funded study & see eligibility criteria: .
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Check out this resource from our friends at
@BatemanHorne
: ER and Urgent Care Considerations for
#MECFS
, which could be helpful to doctors during a hospital trip.
Print to keep handy in case of emergency:
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74
.
@universitytimes
falsely labeled ME/CFS as a “psychosomatic disorder.” Read our response: And urge them to retract.
@TomKindlon
#MECFS
#CFS
#MyalgicE
@IrishMECFSAssoc
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28
74
BREAKING: The Solve Long Covid Initiative has launched a new whitepaper, Long Covid’s Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost, estimating the magnitude of the LC public health crisis. Read more:
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Breaking news: Federal Chronic Fatigue Syndrome committee has been eliminated! Join us to demand Congress take action today! Take action here:
#MECFS
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21
74
We’re excited to announce that this month, Solve M.E. is continuing our
#HowLong
? campaign by participating in a national media tour with two standout members of our community: Dr. Peter Rowe and
@CynthiaAdinig
.
2
18
72
Congress approved funding for
#LongCovid
research and clinical trials, but we know the fight is not over – we must ensure this $1.25 billion is spent on quality research for
#MECFS
to improve the quality of life for millions. Read more at .
1
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It is with deep sadness that we mourn the loss of Sarika Patel, a strong and vibrant ME/CFS advocate. We will honor her memory by fighting to improve the lives for everyone with this terrible illness.
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71
Congratulations to Dr. Anna Gil and Dr. Liisa Selin who secured a $2.5million
@NIH
grant thanks to pilot data they gathered with the support of our Ramsay Grant Program.
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Four Years of Advocacy has paid off! We’re Proud to have Authored and Initiated the First Ever Legislation for ME/CFS Research Funding, H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act
#SolveME
#SolveMECFS
#Covid19
#MECFS
#MEawarenesshour
3
16
65
In a letter to the community, Solve M.E. President Oved Amitay announced the Solve Long Covid Initiative, a project that will utilize over 30 years of our research and advocacy experience advancing the understanding of post-infection diseases.
5
21
69
The
@NIHClinicalCntr
is recruiting for a new study to test the safety of & immune response to a new vaccine against Epstein-Barr virus (
#EBV
), which some research has linked to onset of
#MECFS
. Learn more: .
2
31
71
Dr. M. Van Elzakker
@MBVanElzakker
@harvardmed
will lead a
#neuroimaging
study to look at blood flow in the brains of people with
#MECFS
following an exercise challenge with
#fMRI
experts Ken Kwong & Phoebe Chan. Read about the Ramsay-funded project here:
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We are excited to announce we’re partnering with our UK colleagues on the world's biggest biomedical study of the causes of
#MECFS
! We'll be joining
@decodeme
@actionforme
@CGATist
to help us understand the disease and ultimately find treatments.
#ChronicIllness
#ChronicFatigue
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Today is the LAST DAY to register to participate in Advocacy Week Congressional meetings!
If you or a loved one lives in AR, HI, LA, ME, MS, NE, NM, ND, OK, SD, UT, WV, or WY, sign up for meetings to boost our nationwide representation!
Visit
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We did it! Watch California become the 6th state to pass a resolution for
#MECFS
with unanimous support!
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The review of the new NICE guideline on
#MECFS
for health professionals has been published! It updates treatment recommendations and acknowledges the complexity of this chronic medical condition, which impacts quality of life.
Read more:
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We will continue to lead the charge in raising public awareness about both ME/CFS and Long COVID, and take advantage of every opportunity to educate others, especially researchers, scientists, political leaders, and healthcare providers.
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Thank you Senator
@BernieSanders
for co-sponsoring the
#CAREforLongCovid
Act, bringing us closer to funding research, education, & support services for individuals with
#LongCovid
and post-infection disease. Use our action kit to contact your elected reps:
2
19
69
“Many academics are wrongly treating Long Covid as a totally new thing and ignoring the huge overlaps with other complex, chronic, marginalized illnesses such as myalgic encephalomyelitis, also known as chronic fatigue syndrome,”
@edyong209
shares in a video for
@TheAtlantic
.
For The Atlantic Festival, I filmed a short video version of my recent piece on long-COVID, arguing that the scientific & medical world is not moving quickly or efficiently enough to address the needs of long-haulers.
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Our friends
@polybioRF
continue to produce excellent research on the causes and mechanisms of
#MECFS
. Watch their presentation, "How environmental factors may impact vagus nerve/brainstem/neuroinflammation in ME/CFS and LongCovid" here:
#LongCovid
2
19
69
Dr. Peter Rowe of
@HopkinsMedicine
tackles the myth of deconditioning as a cause of
#MECFS
#SolveMECFS
#DiscoverMECFS17
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Exciting news today from Columbia University’s Center for Infection and Immunity
@CII_Columbia
with findings that build toward the goal of a diagnostic signature for ME/CFS.
#MECFS
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