News from Dysautonomia International

Registration at https://register.gotowebinar.com/register/6995413318672605443?source=DI+FB

 

I just got a "Webinar Full" message.

Must be popular.

 

Apparently it will be in their e-newsletter - sign up at http://bit.ly/emailDI

 

This is now available online.

 

Just got round to watching this.

Interesting talk by Dr Systrom, with some points that I don't think represent generally accepted knowledge. Important bits for me were:

1 - A significant proportion of POTS patients will have <80% VO2Max on day 1 CPET. As so many CFS patients appear to have POTS this would call into question the assumption that day 1 CPETs are usually normal for us (mine isn't).

2 - iCPET on these POTS patients is showing oxygen extraction issues in addition to low filling pressures, the sort of measures normally indicative of mito disease (perhaps best considered as dysfunction in this case). Furthermore this is the general picture across all his syndromic patients, e.g. those with POTS, CFS, Fibro etc.

3 - Restoring normal filling pressure with pre-exercise IV saline bolus increased VO2max substantially - taking into account a slight performance hit from dilutional anemia.

4 - Mestinon (Pyridostigmine) also increases VO2Max significantly and is very strongly recommended, with plans for a blinded study to prove this point. Mestinon has no known mechanism to increase blood volume unlike the saline bolus, so the assumption is that it must be increasing venous return. I may have the facts mixed up here but I don't think iCPETs were generally repeated after Mestinon, rather they did a non-maximal, non-invasive CPET to look for improvement. If that was the case I imagine they couldn't say categorically that Mestinon improved filling pressure but that would be the assumption.

Mestinon was on my list of things to try given the positive anecdotal reports (Jen Brea etc.), but I will definitely try and get some now...

Ryan

 

@Gingergrrl, Dr Schofield is now at IMMUNOe Health Centers in Centennial CO. http://immunoehealth.com/about-us/providers/

 

Wow, @Kellyj80503 Thank you so much for finding this info and alerting me! I have not posted on S4ME for several months due to family emergency (my mom was very ill and passed away last week). I will post about that in another thread to not take this one off track but wanted you guys from S4ME (who do not post on the other board) to know why I have not been here and was not able to keep up with two boards as much as I'd wanted to.

I had several e-mails back and forth with Dr. Schofield (several few months ago) but I did not know specifically where she was practicing now. I live in So. California although one of my best friends from high school lives in Denver, CO (where Dr. Schofield practices now). Dr. Schofield told me that she is not accepting new patients at this time and has a 2.5 year waiting list! But I do not know if this has changed? She had said she hoped to get either a PA or a nurse practitioner (I cannot remember which one) to help her which might reduce the time on the waiting list.

I copied her Bio from the website and the highlighting is my own:

What really strikes me as unique about Dr. Schofield is that she is one of the few doctors (on the planet!) who views "Autoimmune Dysautonomia" (which is my core problem) as an emerging field! Although her main interest is anti-phosopholipid syndrome (which I do not have) she is also very interested in the autoantibodies that I do have (paraneoplastic, anti-muscarinic, beta-adrenergic, etc) and she suspects a subgroup of people with Dysautonomia have these types of auto-abs.

When more common Dysautonomia treatments do not work, or only lead to minimal improvement, she understands that POTS and Dysautonomia can have an autoimmune cause (in some patients) and she tests for autoantibodies and uses high-dose IVIG and other treatments. I have never met her but I shared my situation and treatment plan (from my own doctors) and she felt that I was on the right track. She said that IVIG can often take two years to have the full effect, and for me it will be two years in July. I am continuing to benefit from it (even though it is getting harder to tolerate the side effects).

I would love to see her some day, and for my main doctor to consult with her about my case. I wish she was in my state (vs. Colorado!) and that her waiting list was not 2-3 years long although I completely understand why it is! There is really no one else like her out there and so many patients who need her help and expertise.

Thank you again, Kelly, for tagging me or I never would have seen this.

 

Click on the "Watch on Vimeo" button to view the video

 

Received as an email so quoting all of it.

CALL FOR PROPOSALS
$500,000 in POTS Research Grants Available
Letter of Intent Due February 1, 2019


Dysautonomia International is pleased to announce the availability of up to $500,000 in research grants from our POTS Research Fund. The fund was created in 2013 to provide a dedicated stream of funding to support postural orthostatic tachycardia syndrome (POTS) research. We have issued nearly $1,000,000 in grants to date, which you can review at CurePOTS.org.

Funding Available
We intend to distribute $500,000 in POTS research grants during the summer of 2019. Grants are capped at a maximum of $200,000 per grant, to be issued over a period of 1-3 years. Applications for smaller amounts are welcomed. We expect to fund 3-5 projects during this grant cycle. High-quality projects that are not funded through the initial round of funding may be eligible for a Dysautonomia International online crowdfunding campaign, which past experience suggests can raise up to $100,000, depending on the interest from our patient community. Furthermore, we maintain a list of high-quality POTS research projects in need of funding that large donors request from time to time, and this has previously resulted in additional funding.

2019 Priority Areas
Dysautonomia International's Board of Directors, in consultation with our Medical Advisory Board and Patient Advisory Board, has identified the following research priority areas for our 2019 grant cycle. All proposals should be relevant to one or more of the following priority areas:

• imaging studies in POTS
• biomarkers in POTS
• neuropathological findings in POTS
• the development of animal models for POTS research
  
• exploring biological mechanisms that may explain co-morbidity relationships in POTS (e.g., EDS, MCAS, CSF leaks, autoimmune diseases, etc.)
  
• new or improved methods to diagnose POTS
  
• new treatment approaches to POTS
  
• studies identifying the efficacy of existing treatment approaches in POTS, for treatments that require additional evidence to assist patients in obtaining insurance coverage
  
• development of POTS research tools and infrastructure, especially those needed to support collaborative multi-center studies

The Application Process
We use a two-stage application process. The first stage requires the submission of a three-page Letter of Intent, providing basic information on the proposed project. In the second stage, selected applicants will be invited to submit a more comprehensive application. Detailed budget justifications will be required during the second stage of review.

Who Can Apply?
Anyone capable of conducting credible POTS research can apply, from any country. We encourage early-career researchers to apply with appropriate supervision from experienced researchers. Applicants can submit a maximum of two proposals each. There is no limit to how many proposals can come from one institution. Dysautonomia International board members are allowed to apply but, consistent with our Conflict of Interest Policy, board members may not review their own proposals or proposals from institutions they are affiliated with.

Important Deadlines
Letter of Intent Due: February 1, 2019
Selected Applicants Invited to Submit Full Application: March 1, 2019
Full Application Due: May 1, 2019
Grant Recipients to be Notified: July 1, 2019

Letter of Intent (LOI) Instructions
Interested applicants should submit a three-page letter on their institutional letterhead, on or before February 1, 2019, describing the proposed project via email to research@dysautonomiainternational.org. Late LOIs will not be accepted. The LOI should explain:

• which of the 2019 grant cycle priority area(s) the proposal is relevant to
• the aim(s) of the study
  
• the testing/data collection proposed
  
• the number of POTS subjects and controls involved
  
• the time frame to begin enrollment and completion of the study
  
• the cost of the total project
  
• the amount of funds requested from Dysautonomia International
  
• other anticipated sources of funding, if any
  
• whether similar studies have already occurred

The Review Process
LOIs and full applications will be reviewed by our Board of Directors in consultation with our Medical Advisory Board, Patient Advisory Board and independent experts using a numeric rating system that scores the proposals for scientific merit, likelihood of success, meaningful impact on the lives of POTS patients, and other factors. All reviewers have agreed to keep information learned during the review process strictly confidential using signed Confidentiality Agreements.

Contact Information
Please feel free to ask questions about the overall grants process before applying. Contact research@dysautonomiainternational.org.

Reviewers Needed
If you have published research on autonomic disorders or if you see a large volume of POTS patients clinically, we encourage you to apply to serve as a volunteer grant reviewer. Each reviewer is assigned 2-5 projects to review within 30 days, depending on the time they have available. If you are interested in serving as a reviewer, please send your C.V. to research@dysautonomiainternational.org.

Donations Welcome
Dysautonomia International is able to fund this important research through the generosity of many donors, large and small. If you would like to support our POTS Research Fund, we invite you to contribute at CurePOTS.org. 100% of donations to the POTS Research Fund go directly to research. If you would like to support our physician education, public awareness and patient empowerment programs that benefit individuals with all autonomic disorders, we invite you to contribute at dysautonomiainternational.org/donate. All donations will be doubled this month, up to $125,000, thanks to generous matching grants from the Red Lily Foundation and two anonymous donors.​

 

Has anyone forwarded this to the big players in ME research?

 

From an email.

Dysautonomia International is pleased to announce the availability of $200,000 in grants from our POTS Research Fund and $50,000 in grants from our brand new Dysautonomia Research Fund. We welcome contributions to either fund at CureDys.org to help us fund even more research.

This year's grant program will focus on supporting Early Career Investigators, to help attract additional researchers to the field and support the work of young researchers who are just starting to build their careers. Early Career Investigators are defined as individuals currently enrolled in graduate school, or individuals who received their terminal degree on or after January 1, 2014. Researchers from any country can apply.

Medical Conditions Included
Dysautonomia International will accept applications to study the following medical conditions for our 2020 grant cycle:

• postural orthostatic tachycardia syndrome
• neurocardiogenic syncope
• inappropriate sinus tachycardia
• idiopathic orthostatic intolerance
• autoimmune autonomic ganglionopathy
• autoimmune autonomic neuropathies
• idiopathic autonomic neuropathies
• gastroparesis due to autonomic dysfunction or autonomic neuropathy
• chronic autonomic dysfunction associated with COVID-19

2020 Priority Areas
All proposals should be relevant to one or more of the following priority areas:

• imaging studies
• biomarkers
• neuropathological, histopathological or other tissue pathology
  
• exploring biological mechanisms that may explain relationships between the above listed disorders and co-morbidities like EDS, MCAS, CSF leaks, autoimmune diseases, etc.
  
• new or improved diagnostic approaches
  
• new treatment approaches
  
• development of research tools and infrastructure, especially those needed to support collaborative multi-center studies
• addressing racial disparities
• exploring post-COVID onset autonomic dysfunction

The Application Process
We use a two-stage application process. The first stage requires the submission of a three-page Letter of Intent, providing basic information on the proposed project. In the second stage, selected applicants will be invited to submit a more comprehensive application. Detailed budget justifications will be required during the second stage of review.

Additional Details
For complete details on our 2020 grant funding process, please visit our website.
POTS Research Fund Call for Proposals
Dysautonomia Research Fund Call for Proposals

Reviewers Needed
If you have published research on autonomic disorders or if you see a large volume of autonomic patients clinically, we encourage you to apply to serve as a volunteer grant reviewer. Each reviewer is assigned 2-5 projects to review within 30 days, depending on the time they have available. If you are interested in serving as a reviewer, please send your C.V. to research@dysautonomiainternational.org.

 

Dysautonomia International 2020 Virtual Conference

October 15-18, 2020.

Will be broadcast live online through Zoom.

Registration is free.

https://www.dysautonomiainternational.org/page.php?ID=205

 

Were you able to tune in to the conference today, @mango?

I listened for a bit. Lots of talks on the agenda, obviously not specifically focused on ME/CFS given the conference is much broader than just ME, but interesting nonetheless.

Was nice that it's free and on zoom so very easy to tune in. Seemed like there were a lot of patients in the audience based on volumes of questions, although wasn't able to tell exactly how many given the format of the presentation.

 

Unfortunately no, I'm too ill. Will have to wait until they make the recordings of the sessions available in mid-November, and try to watch them in tiny chunks.

 

videos available on vimeo

Code:

https://vimeo.com/485618376

 

Join Dysautonomia International for the world's largest conference on autonomic nervous system disorders, broadcast online July 14-17, 2022! Learn about dysautonomia and related conditions from the top experts, connect with fellow with patients, caregivers, and medical professionals, find out how to get involved in dysautonomia research and advocacy, and more! This year's conference is extra special as we celebrate Dysautonomia International's 10th Anniversary, marking a decade of dysautonomia advocacy.

...

TOPICS
Our expert speakers will be presenting on postural orthostatic tachycardia syndrome, orthostatic intolerance, orthostatic hypotension, syncopal disorders, inappropriate sinus tachycardia, Long COVID dysautonomia, gastrointestinal dysmotility, Ehlers-Danlos syndrome, mast cell activation syndrome, Sjogren's and other autoimmune dysautonomias, and paraneoplastic forms of dysautonomia. We'll also hear updates on brand new research, pharma and non-pharma treatment approaches, lifestyle tips, advocacy training, patient stories and more!

https://web.cvent.com/event/843f4246-2147-4653-bfc4-caafce8a8192/summary

 

The agenda shows

"Friday, July 15, 2022

9:00 AM - 7:30 PM EDT

Research Updates on POTS, AAG, OI, Long COVID, ME/CFS and more!"

Speakers that I recognise (for both good and bad reasons) from the list of speakers so far are

Jessica Eccles, Brighton & Sussex Med. School
David Putrino, Mount Sinai Health System
& David Systrom, Brigham and Women's Hospital

 

It seems that during the talk on exercise for ME/CFS, which included Prof Visser, Dr Systrom, Dr Raj and another POTS rehab expert, Dr Systrom said that exercise cannot cause long-term worsening of ME and Dr Raj said that one could exercise their way out of PEM.

Edit: Full excerpt:

Lauren Stiles (founder of Dysautonomia International): “Do you see [long-term worsening] in ME/CFS patients who push too much?”

Dr Systrom: “Rarely… There’s a spectrum of crashes… The super severe [crashes] can last months… most of the time though, when I hear about a severe crash and that’s really at one end of the spectrum that lasts months, it’s related to an infection – a more severe infection... rather than overdoing physically.

So I think it’s pretty rare that any patient can have a sustained crash due solely to physical activity… I don’t think it’s super common and I don’t think it should be a huge concern.”

He also specifically referred to his approach as "graded exercise therapy."

https://twitter.com/user/status/1550503425019990016