OMF- #MayMomentum campaign is here!

[Ben H]

Hi guys,

Some info from OMF on the third annual #MayMomentum campaign, including info on funding two new pilot treatment trials:

Dear friends,

Today Open Medicine Foundation launches its third annual #MayMomentum, our fundraising campaign in solidarity with May 12th ME/CFS International Awareness Day and dedicated to the millions of lives disrupted by ME/CFS and related chronic complex diseases.

We are working to free our community from the cruel restraints of this disease and to shield the millions more who could have it someday. Our 2020 #MayMomentum takes place against the backdrop of COVID-19, challenging us all to stay focused, bold, and most importantly, hopeful.

And, we have reason to be hopeful. Just read this update from Dr. Ron Davis, Director of our OMF Scientific Advisory Board:

“Throughout May, OMF will be announcing three new projects that may have real potential to help ME/CFS sufferers and shed light on this disease. OMF is funding two new pilot treatment trials, Mestinon and Kynurenine, and a project to study COVID-19 patients over time, with the expectation that some may develop ME/CFS.

We need your support in 2020 to scale up our efforts, and to increase the momentum of the research being undertaken at our four Collaborative Research Centers.”

Since 2012, OMF has raised over $24 million for ME/CFS research from private donations large and small, making us the world’s largest ME/CFS private research funder. And yet this is a drop in the bucket for medical research.

We have a long way to go to level the imbalance in funding and to fully scale-up research. It takes visionaries, like the brilliant minds leading the Collaborative Research Centers and our remarkable scientific advisory board members, and significant and sustained investment from supporters like you, to conduct the breadth and depth of research required to find treatments and a cure.

Please visit #MayMomentum for more information. There are many ways to help, and we have made it easy for you to donate, and to join the thousands across the globe that make up Team OMF. The challenges are real, but we won’t lose momentum-not with you on our team.

With hope for all,

Linda Tannenbaum
Founder & CEO/President

PS: I have a special request during #MayMomentum: If you haven’t already done so, please consider becoming a Sustaining Donor. Your monthly contribution will have a unique impact because it creates a reliable source of funding for our researchers.

Become a Sustaining Donor Now

Make a one-time donation for #MayMomentum today!

Please visit #MayMomentum for more information.

______________________________________________________________

May 12th ME/CFS International Awareness Day

Thanks,


B

 

[Pendergast]

OMF is funding two new pilot treatment trials, Mestinon and Kynurenine

Anyone has more info on this?
I don't have a clue about Kynurenine and I thought Mestinon was used mainly on POTS patients.

Which have been the reasons for selecting this two drugs instead of others (Copaxone, Suramine..) for the first two treatment trials?

 

[wigglethemouse]

Anyone has more info on this?
I don't have a clue about Kynurenine and I thought Mestinon was used mainly on POTS patients.

Which have been the reasons for selecting this two drugs instead of others (Copaxone, Suramine..) for the first two treatment trials?

The OMF website has more info here

Mestinon trial: https://www.omf.ngo/2020/04/26/the-mestinon-clinical-trial-for-me-cfs/
- see also https://clinicaltrials.gov/ct2/show/record/NCT03674541

Kynurenine trial: https://www.omf.ngo/2020/04/26/kynurenine-clinical-trial-for-me-cfs/

 

[Pendergast]

Thank you @wigglethemouse !

 

[raghav]

Can Kynurenine be given as an oral supplement ? Or is it a subcutaneous injection ?

 

[wigglethemouse]

an Kynurenine be given as an oral supplement ? Or is it a subcutaneous injection ?

One user at s4me found this very small clinical trial and it was intravenous
https://clinicaltrials.gov/ct2/show/NCT03212430

Funny that the hypothesis in that clinical trial was that "L-kynurenine induces vasodilation in the cerebral vessels and trigger headache in healthy individuals." when OMF hope to reduce headaches.

 

[Ben H]

Hi guys,

Here's the next #Maymomentum post, with Chris Armstrong giving an update on one of the new clinical trials:

Dear Friend,

As someone aware of the impact of ME/CFS, you understand, as we do, that there is an urgent need to improve the clinical care for people suffering from this devastating condition.

#MayMomentum is all about ensuring that research into ME/CFS and other related chronic, complex diseases leads to results and to life-changing treatments. We hope that you will give today in honor of #GivingTuesdayNow, and show the world that there has never been a more important time to fight ME/CFS!

With a focus on treatment, OMF has invested $150,000

to study people with ME/CFS who demonstrate Preload Failure during an invasive cardiopulmonary exercise test (iCPET). I have asked Christopher W. Armstrong, PhD, Science Liaison at Open Medicine Foundation to explain why we are so excited about this latest project:

"I am deeply gratified to reveal the first of two new clinical trials focused solely on treatment options for people with ME/CFS, the Mestinon Clinical Trial
for ME/CFS.

This trial is being conducted at the Brigham & Women’s Hospital by Dr. David Systrom in association with the Harvard ME/CFS Collaboration at the Harvard Affiliated Hospitals. Dr. Systrom has found that some people with ME/CFS and suffering from fatigue, have what is known as Preload Failure.

In this instance, Preload Failure is thought to come from an imbalance in the autonomic nervous system and results in reduced filling of the heart during exertion. The clinical trial will test the exercise response to Mestinon in people with ME/CFS, with Preload Failure.

Prior studies have shown improvement in patients in the general population with Preload Failure after treatment with Mestinon. Dr. Systrom intends to evaluate the short-term effects of Mestinon on the autonomic nervous system and neurovascular control in people with ME/CFS, who also have Preload Failure.

Studying these features will deepen our understanding of ME/CFS, and this trial may lead to new and specific therapeutic options for people with ME/CFS."

This is just the first phase of this research. Much work remains to deliver treatments for ME/CFS and other chronic complex diseases. OMF strives to overcome the disparity in funding in our field of research, harnessing the passion of our community and the talent and commitment of researchers across the globe to bridge the funding gap and keep up research momentum towards a cure.

Will you please invest now in this essential research and become an OMF Sustaining Donor during #MayMomentum? Sustaining Donors have found the perfect way to invest in scientific research.

Your sustaining, monthly gift of any amount allows us to build momentum in the lab by insuring uninterrupted funding. Please consider investing today in the vital research conducted at our four, OMF established Collaborative Research Centers.

Thank you, and stay safe,

Linda Tannenbaum
Open Medicine Foundation

It’s Giving Tuesday! Please give to #MayMomentum and show the world that fighting ME/CFS should matter to everybody!


Become a Sustaining Donor Now

Make a one-time donation for #MayMomentum today!

Please visit #MayMomentum for more information.

Prefer to use Facebook for monthly or onetime giving?
Check it out here: #MayMomentum Facebook

______________________________________________________________

May 12th is ME/CFS International Awareness Day


Thanks,


B

 

[Ben H]

Hi guys,

Some really good news, very unexpected on the advocacy front but for all you fans of 'Vikings' (which includes me...!) this is fantastic:


BREAKING NEWS

We are thrilled to announce actress Jennie Jacques
as OMF's newest Celebrity Ambassador!

Jennie is an accomplished English actress known for many TV and movie roles, including Vikings, a popular historical drama television series currently airing on the History channel, where she plays the role of Saxon Queen Judith.

In addition to nurturing her flourishing acting career, Jennie is dedicated to advocating for those living with devastating chronic illnesses such as ME/CFS.

Through the use of her social media platforms, Jennie frequently speaks out on behalf of all those who are suffering in silence. With her large fan base of followers, Jennie has the unique ability to bring ME/CFS to the forefront, sparking meaningful conversations and helping to drive more funding for critical OMF-funded research into ME/CFS.

Jennie explains in her own words, why her new role as an OMF Ambassador is of significance to the entire ME/CFS community:

“I have a keen interest in the science behind ME/CFS. I am in awe of the stellar Scientific Advisory Board working for OMF. As an OMF Ambassador I hope to come up with creative ways to engage with researchers and ultimately use my platform to raise awareness and further educate people.

The illness is severely under-represented, and I am honoured to be a relatable public voice. I find myself productively looking up medical jargon after delving into videos, interviews, and seminars on ME/CFS; I hope, as an OMF Ambassador, to relay such information in a way which enables a person without the scientific vocabulary to better comprehend.

I am excited to collaborate with OMF and I look forward to building our relationship and moreover, finding a cure.”

We share this excitement in welcoming Jennie to Team OMF, and we sincerely thank her for her dedication to raising awareness. Her willingness to publicly advocate for the millions suffering from ME/CFS and other chronic, complex diseases, serves to help attract the resources required to fight this battle.

Follow Jennie Jacques on Facebook

______________________________________________________________



Please give to #MayMomentum
and show the world that fighting ME/CFS should matter to everybody!

Please visit #MayMomentum for more information.

Prefer to use Facebook for monthly or onetime giving?
Check it out here: #MayMomentum Facebook


She seems very interested in the science, and I believe she was checking out Mike Van Elzakker's work on twitter


Take care,


B

 

[Ben H]

Hi all,

Here is some news on the OMF-funded study on Covid-19 and ME/CFS:

Breaking News

OMF Funded Study: COVID-19 and ME/CFS

Against the backdrop of COVID-19, Open Medicine Foundation (OMF) remains focused on finding the answers needed to win the fight against ME/CFS and other chronic, complex diseases. Today, because of the pandemic, an opportunity exists to increase the understanding of ME/CFS.

OMF is proud to announce a multi-year collaborative effort to unlock the triggering mechanisms of ME/CFS revealed through the study of post-COVID-19 patients. At the heart of this effort is the leveraging of the strategic relationship between our four Collaborative Research Center (CRC) Directors.

In the coming months, we will share details about the study and its progress. We will also continue to expand our efforts to raise the significant funding required to conduct this international study and to sustain the over thirty research and treatment projects currently underway at the four, OMF-funded CRCs.

The following overview was prepared by our CRC Directors, led by Ronald W. Davis, PhD. We hope that after learning more, you will choose to give today,
and support this transformative undertaking:

Conversion of COVID-19 patients to people with ME/CFS

"We are proud to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae (the medical term for chronic conditions after an illness) to ascertain whether they convert to ME/CFS and if it occurs, to study the molecular transformation.

This will involve the collection of body fluid samples at frequent intervals, continuous health monitoring via wearables, and symptom data recorded at many separate time points over two years. The expected outcome is that some will develop ME/CFS, as many other viruses serve as triggers for the disease.

The COVID-19 pandemic is an unprecedented opportunity to study the biological factors that may determine or predict the development of ME/CFS.

In a significant percentage of patients, severe viral infection preceded their development of ME/CFS. In this current COVID-19 pandemic, it seems likely that COVID-19 may also be a trigger, and that many people will develop ME/CFS.

It is thought that up to 11% of patients who had severe infections from Epstein-Barr virus (EBV), Q fever (Coxiella burnetii), or Ross River virus (RRV), and others, develop ME/CFS. Other studies following SARS and MERS suggest an even higher proportion (50%) develop ME/CFS or Fibromyalgia.

After COVID-19 patients recover from the acute phase of their disease, they may be at significant risk for a prolonged period of post-viral fatigue, which may last six months or more before returning to their previous normal state. However, for some patients, their fatigue may fail to resolve or become even more profound over these initial six months and continue indefinitely, converting to ME/CFS.

A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS.

The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME/CFS."

Our 2020 May Momentum campaign reminds us of the critical importance of staying focused, bold, and, most importantly, hopeful. Please support OMF,
as we ask questions and find the answers.

______________________________________________________________

Give to #MayMomentum
and show the world that fighting ME/CFS should matter to everybody!

Please visit #MayMomentum for more information.

Prefer to use Facebook for monthly or onetime giving?
Check it out here: #MayMomentum Facebook


Hope you're all keeping safe in these times,


B

 

[ljimbo423]

"A detailed genomic, metabolic, and proteomic analysis over time will likely provide tremendous insights to understand how to identify those pathways that can be useful to predict, diagnose, or treat ME/CFS.

The world is intensely focused on COVID-19 at the moment. The likely conversion of thousands of patients to a disease that causes life-long suffering provides a unique opportunity for the world to finally pay appropriate attention to ME/CFS."

It's sad and tragic that so many will most likely develop ME/CFS from covid 19. At the same time, this could bring great validation, attention and knowledge about our disease to light.

 

[Ben H]

A message from Whitney (@Janet Dafoe (Rose49) :

We are honored to share an excerpt from
a message from Whitney Dafoe...

“My name is Whitney Dafoe and I have severe ME/CFS. I have had symptoms for 15 years but have slowly gotten worse because of a lack of beneficial treatments.

I am only able to communicate by taking a drug called Ativan which temporarily alleviates some of my sensitivity to contact with others. It takes hours to communicate these posts and makes me worse, but I do it anyways because most people with severe ME/CFS simply disappear into dark rooms never to be seen or heard from again and someone has to tell our story. We exist.

ME/CFS is an extremely devastating illness that takes and takes and takes until there is nothing left but flesh and bone. I’ve lost my friends, my career, my hobbies, everything that brought meaning to my life and all sense of humanity.

Right now, a viral pandemic has spread throughout the world.

Everyone reading this should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS.

Things have begun to shift thanks to a group of renowned scientists from around the world, including many Nobel laureates, deciding to take on the illness. Led by one of the greatest scientific minds in the world, Ronald Davis, & working out of Open Medicine Foundation, they are determined to #EndMECFS.

Right now, OMF has funded an ambitious study taking blood from Coronavirus patients and monitoring their progress so they can see, in real time, the transition from Coronavirus to ME/CFS and gather huge amounts of medical data. This could be a turning point to figuring out how ME/CFS gets triggered and how to stop it before it starts.

Everyone should be terrified at the prospect of getting ME/CFS. No one who gets the Coronavirus is safe. But you can do something about it to help in case you do. Please donate to OMF today.”

Read the full content of Whitney's Post

This sweeping photograph, “Tiny Rainbows,” was taken by Whitney Dafoe
before the onset of ME/CFS. Please visit his website to see more of his work: http://www.whitneydafoe.com/

______________________________________________________________


Please give to #MayMomentum
and show the world that fighting ME/CFS should matter to everybody!

Please visit #MayMomentum for more information.

Prefer to use Facebook for monthly or onetime giving?
Check it out here: #MayMomentum Facebook

 

[Ben H]

Hi guys,

An update on the Kynurenine trial with some nice details:

As part of #MayMomentum, Open Medicine Foundation is thrilled to announce a new clinical trial that builds on OMF-funded research and shows the interconnected strategies of the four OMF-Established ME/CFS Collaborative Research Centers.

We hope that you will agree that this thoughtful research strategy deserves your support and that today is the day that you decide to contribute to #May Momentum!

OMF is funding a clinical trial, supervised by

Jonas Bergquist, MD, PhD, Director of the ME/CFS Collaborative Research Center, Uppsala, to understand potential disturbances in the tryptophan metabolism and to test the benefits of treating people with ME/CFS with Kynurenine.

We have asked our esteemed colleague,
Dr. Robert Phair, to provide an introduction
and overview.

With funding by OMF, Dr. Phair did extensive research on results from the OMF-funded Severely Ill Patient Study and then published a paper in the summer of 2019. His article detailed the “metabolic trap” hypothesis. This theory includes an examination of the role of the essential amino acid, tryptophan, as a critical regulator of the production of kynurenine.

Dr. Phair is co-founder and Chief Science Officer of Integrative Bioinformatics, Inc,
a small company built around a unique software capable of modeling human biochemistry and theories of disease.

“Those of us working on the IDO metabolic trap hypothesis for ME/CFS are really interested in the study proposed by Dr. Bergquist and his team in Uppsala, and recently funded by OMF. Here’s why:

Suppose that some brain cells in a particular brain nucleus are in the IDO metabolic trap. This means that in those cells the concentration of tryptophan is too high, and the concentration of kynurenine is too low.

Supplying an outside source of kynurenine, as Dr. Bergquist proposes, could conceivably solve part of the problem by allowing those brain cells to make the neuroactive metabolites of kynurenine that they cannot make if the metabolic trap has been sprung.

So, the clinical trial might improve symptoms caused by too little kynurenine or too little kynurenic acid, a known neuro-protectant.

Dr. Bergquist’s expertly designed clinical trial of kynurenine in ME/CFS to improve brain fog, memory and headache is both important and timely.”

- Robert Phair, Ph.D. The Metabolic Trap


Kynurenine Clinical Trial for ME/CFS
Kynurenine is naturally produced in the body, is a key metabolite in the tryptophan metabolism, and serves several roles in the immune system and inflammation.

OMF has provided support to initiate the study in a randomized, double-blind, placebo-controlled, crossover study. The purpose of the study is to evaluate whether kynurenine is directly connected to ME/CFS patient symptom severity.

Project Description
Participants will be randomized to either receive Kynurenine or a placebo for a period of three months and then after a “washout” period, patients will switch to an additional three-months of Kynurenine or placebo in a crossover design.

This design does not require healthy controls and instead focuses on whether Kynurenine supplementation has any benefit above placebo in people with ME/CFS.

The main study endpoints will be the effects of supplemental Kynurenine to improve cognitive impairment (“brain fog”), memory and headache. Patients will also be asked to register their activity by using wearable sensors and have biological samples taken for further testing.

New methods have been developed under Dr. Bergquist to measure the metabolic pathways relevant to Kynurenine. These new methods are used to identify people with ME/CFS that have low Kynurenine in the plasma. This method will also be used to monitor the metabolic effects of Kynurenine supplementation during the trial.

Studying these features will improve our understanding
of ME/CFS and this clinical trial may lead to
new therapeutic options for people with ME/CFS.

Give to #MayMomentum
And show the world that fighting ME/CFS should matter to everybody!

______________________________________________________________

Give to #MayMomentum
and show the world that fighting ME/CFS should matter to everybody!

Please visit #MayMomentum for more information.

Prefer to use Facebook for monthly or onetime giving?
Check it out here: #MayMomentum Facebook


B

 

[bertiedog]

One user at s4me found this very small clinical trial and it was intravenous
https://clinicaltrials.gov/ct2/show/NCT03212430

Funny that the hypothesis in that clinical trial was that "L-kynurenine induces vasodilation in the cerebral vessels and trigger headache in healthy individuals." when OMF hope to reduce headaches.

That sounds like a nightmare for somebody like me who has a battle daily to control severe migraines. Vasodilation is the last thing I need, my body seems to be in that state almost permanently and I know that for sure because the only thing that will stop the pain is a drug like a Triptan that causes vasoconstriction!

BTW I just donated to that study too seeing headaches mentioned which are the bain of my life!!

Pam

 

[bertiedog]

Just had another thought too about vasodilation - that would also be a nightmare for a sufferer of POTS or orthostatic intolerance which I also do battle with especially in the summer.

Pam

 

[Ben H]

That sounds like a nightmare for somebody like me who has a battle daily to control severe migraines. Vasodilation is the last thing I need, my body seems to be in that state almost permanently and I know that for sure because the only thing that will stop the pain is a drug like a Triptan that causes vasoconstriction!

BTW I just donated to that study too seeing headaches mentioned which are the bain of my life!!

Pam

Thanks for your support Pam.

As you mention that trial was in healthy people, and whilst slightly ironic, many things that healthy people take have an adverse reaction in MECFS patients. We know our bodies are not functioning correctly, and we won't know if kynurenine helps unless it is trialed. It may still cause headaches. However, healthy people will have normal levels of vasodilation and presumably kynurenine, so perhaps the extra vasodilation tipped them over the edge.

If some MECFS patients have restricted cerebral blood flow, which has been suggested and studied iirc, perhaps it will normalise that too for many patients, without tipping them over the edge as what potentially happened in the healthy peeps.


B

 

[bertiedog]

Thanks for that @Ben H but I don't think I would be a candidate to try it if it is a vasodilator any time soon.

Pam

 

[Ben H]

Thanks for that @Ben H but I don't think I would be a candidate to try it if it is a vasodilator any time soon.

Pam

We'll have to wait and see-it's one of multiple projects


B

 

[Sushi]

That sounds like a nightmare for somebody like me who has a battle daily to control severe migraines. Vasodilation is the last thing I need, my body seems to be in that state almost permanently and I know that for sure because the only thing that will stop the pain is a drug like a Triptan that causes vasoconstriction!

Here is another enigma: I have been trying Mestinon which increases acetylcholine—this should, theoretically make my chronic migraines worse, but in fact stops them...but only for a few weeks. I am trying pulsing Mestinon to achieve the therapeutic dose of acetylcholine. Just another example of how our patient group often responds differently and that only a trial such as this one can tell us how cerebral vessel dilation works in patients like us.

As you mention that trial was in healthy people, and whilst slightly ironic, many things that healthy people take have an adverse reaction in MECFS patients. We know our bodies are not functioning correctly, and we won't know if kynurenine helps unless it is trialed. It may still cause headaches. However, healthy people will have normal levels of vasodilation and presumably kynurenine, so perhaps the extra vasodilation tipped them over the edge.

 

[Ben H]

Here is another enigma: I have been trying Mestinon which increases acetylcholine—this should, theoretically make my chronic migraines worse, but in fact stops them...but only for a few weeks. I am trying pulsing Mestinon to achieve the therapeutic dose of acetylcholine. Just another example of how our patient group often responds differently and that only a trial such as this one can tell us how cerebral vessel dilation works in patients like us.

Exactly, well said Sushi.


B

 

[Ben H]

Hi guys,

If you support OMF, and the #MayMomentum campaign, there are only 4 days left to give:

​

Dear Friends,

Do you count yourself as one of the over 800 members of the international ME/CFS community that are part of Open Medicine Foundation’s 2020 #MayMomentum? If so, we could not be more grateful!

If you are still waiting to give, there are just four days left to join our community by supporting OMF's annual #MayMomentum campaign to fund ME/CFS research and level the research playing field.

You can be confident that your donation to OMF will support the largest concerted effort to understand, treat, and eventually cure ME/CFS and the myriad of related diseases.

We are committed to raising the significant funding required to scale up the international studies announced in May 2020, of two new treatment trials and the COVID-19 research project. Supporters like you can make the difference.

Additionally, your contribution will help accelerate the over thirty research and treatment projects currently underway in the “The End ME/CFS Project,” conducted across our four OMF-Established ME/CFS Collaborative Research Centers.

​

Your support in May gives us the confidence year-round to forge ahead in uncertain times and the resources to plan for the future of our fight against ME/CFS and other chronic complex diseases.

OMF is very proud of our accomplishments to date. In less than ten years, we have gathered many of the world's foremost researchers into a cohesive effort to understand a disease almost wholly ignored by the research establishment until recently.

And especially this year, we would like to encourage you to become a Sustaining Donor. Your monthly gift of any size is multiplied over the year, enabling OMF to sustain the momentum!

You are the motivation behind our momentum. Won’t you please give today?

With hope for all,

Linda Tannenbaum
Founder & CEO/President
Open Medicine Foundation
www.omf.ngo
OMF +1-650-242-8669 office
OMFCA +1-416-848-0055 office
+1-818-231-6994 mobile
Leading research. Delivering hope.

______________________________________________________________

Give to #MayMomentum
and show the world that fighting ME/CFS should matter to everybody!

Please visit #MayMomentum for more information.

Prefer to use Facebook for monthly or onetime giving?
Check it out here: #MayMomentum Facebook
​