OMF Newsletter June 2017

[Ben H]

Hi guys,

Latest Newsletter for you-lots going on!

June 2017

Community Symposium on the Molecular Basis of ME/CFS
Sponsored by OMF
Saturday, August 12, 2017 at Stanford University​

Come hear from our amazing team in person!
Join us for a unique and unprecedented opportunity to learn from and interact with these world-class scientists.

Learn more.
Register here.​

Major Patient Care Improvements Coming In Two Countries

Dream. Believe. Do it. Join Team OMF in HOPE.

​

The End ME/CFS Worldwide Tour in Europe has been very productive in the first two weeks. The first stop of the tour was in the Isle of Man, where we met the incredible ME/CFS community leaders, Celia Marshall, Phil Gawne and Craig Morris. Our two-day visit included meetings with patients, family members, government officials, and physicians.

As a result of the Parliament meeting, the Isle of Man government has already agreed to set up additional ME/CFS services for both adults and children. (Photo: Linda Tannenbaum & Kate Beecroft, Minister of Health and Social Security) Read more.

​

Our visit in Northern Ireland was organized by the Hope for ME & Fibro group under the dedicated leadership of Joan McParland. Since 2011, Hope for ME & Fibro has been bringing together world experts and researchers for their annual conference, which we were honored to take part in this year. Immediately after our visit, there was an announcement of improvement in medical education: all General Practioners in Northern Ireland "will receive new updated information on ME and fibromyalgia, including biomedical research, confirming the very physical nature of the disease." (Photo: conference panel & leadership from Hope 4 ME & Fibro.) Read more.

These visits underscore the importance of not only seeking a cure for patients worldwide but also of raising awareness in the general public, the media, government and healthcare professionals.
ME/CFS is truly an international problem. So many patients have their lives on hold. We must continue to fast-track our efforts to find a cure. It is also crucial to improve the education of physicians and advocate for better support services for patients.


End ME/CFS Worldwide Tour Blog Shares Stories of Courage and Strength

We invite you to follow the European Tour. With almost daily posts, Linda Tannenbaum, CEO/President, is sharing poignant moments and individual stories of courage and strength, all while building a world-wide network of patients, parents and caregivers. Please follow the Tour on Facebook, Twitter, and our website.

Support Research

Please donate today to help fund the upcoming Collaborator Meeting and Community Symposium at Stanford.

Your donation will support OMF's sponsorship of this important research meeting.

On August 10 and 11, we are bringing together an outstanding team of scientists from all over the world, with whom Dr. Davis has already been collaborating on ME/CFS research. Assembling this diverse expertise in one room will be the ideal opportunity for this team to interpret their collective research results and to set a strategic and collaborative path forward. OMF is underwriting the cost of the two-day scientific meeting and is supporting the Community Symposium on August 12, where you as a patient can meet our scientists in person and be updated firsthand on the latest progress in research and future plans.

Dr. Davis and Linda Tannenbaum, both parents of sick children, are committed to finding answers and a cure. They are driven to help their children and millions of patients around the world. They know the best way to achieve our goal is by working together in a collaborative and open environment.

Donate today to make their vision a reality for all patients around the world.


Open Medicine Foundation
Tax ID: 26-4712664
Our Purpose:

• To fast-track revolutionary research for ME/CFS and related chronic complex diseases.
• To support collaborative scientific research to discover molecular causes, find effective treatments, diagnostic markers, prevention approaches and cures.
• To communicate, engage and inform the patient community.
• To help drive & support global collaboration

A Word from our CEO/President

OMF's approach to finding answers is broad-based. We recognize that building global collaboration with the patient and scientific community will help to fast-track answers. With that in mind, we launched the End ME/CFS Worldwide Tour. In addition, we are honored that researchers from around the world are traveling to join Ron Davis and team for the upcoming Collaborative Team Meeting and Community Symposium on the Molecular Basis of ME/CFS. These are two examples of how we are working with you to find answers.

We need your help to go further. I invite you to please support our efforts and donate to help OMF find a cure for patients around the world. Together we are stronger!

Thank you being our partner in finding answers.
With shared hope for all,

Linda Tannenbaum
CEO/President
Linda@omf.ngo

Donate Now
to join the Team of HOPE!

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If you would like to donate to support OMF's sponsorship of this incredible Symposium, that would be fantastic.

Thanks guys,

B


@Janet Dafoe (Rose49) @AshleyHalcyoneH

 

[jimells]

Hey @Ben Howell

Do you know if any mast cell experts have been invited to the August symposium?

I have been learning about them over the past few months. The more I study the research, the more convinced I am that they play a major role in a subset of ME patients. Further, I have had substantial improvements in some symptoms since I started taking an antihistamine every day. For example, the hyperadrenergic POTS crashes and the itching on standing (or doing almost anything) have stopped.

Here is an excerpt from Theoharides et al, "Chronic Fatigue Syndrome, Mast Cells, and Tricyclic Antidepressants", 2005:

There are currently no effective treatment of CFS and no reliable animal models. Tricyclic antidepressants have been reported to be helpful at concentrations lower than those typically used to treat depression.

The beneficial mechanism of antidepressants in patients with CFS is not fully understood. We hypothesize that corticotropin-releasing hormone (CRH) and other related peptides secreted by acute stress, activate diencephalic mast cells, either directly or through neurotensin (NT), leading to the release of proinflammatory cytokines that contribute to CFS pathogenesis (Fig. 1).

Mast cells and their mediators have been implicated in diseases that are comorbid with CFS; in fact, there may be altered mast cell function in some tissues of CFS patients. Mast cells can be activated by stress hormones, such as CRH, and neuropeptides, such as NT.

Mast cells are located perivascularly in close proximity to neurons in the thalamus and hypothalamus, especially diencephalon and the median eminence; there 50% of histamine derives
from mast cells, whereas the rest is of neuronal origin.

Mast cells are actually juxtaposed to CRH-positive nerve processes in median eminence. Mast cell–derived proinflammatory molecules, especially interleukin (IL) 1, IL-6, IL-8, tumor necrosis factor, and tryptase, could then induce CFS symptoms.

NT is a powerful trigger for mast cells, and the in vivo activation of mast cells by CRH was recently shown to depend on NT. NT can be up-regulated in the hypothalamus by bacterial lipopolysaccharide and can regulate the hypothalamic-pituitary-adrenal axis.

Mast cells could also stimulate the hypothalamic-pituitary-adrenal axis through histamine and IL-1 or IL-6. Human mast cells also contain CRH, which could be released in response to immunologic stimulation.

And here is another paper, "Brain fog", inflammation and obeisity: key aspects of neuropsychiatric disorders improved by luteolin", 2015:

Brain "fog" is a constellation of symptoms that include reduced cognition, inability to concentrate and multitask, as well as loss of short and long term memory. Brain "fog" characterizes patients with autism spectrum disorders (ASDs), celiac disease, chronic fatigue syndrome, fibromyalgia, mastocytosis, and postural tachycardia syndrome (POTS)...

Brain "fog" may be due to inflammatory molecules, including adipocytokines and histamine released from mast cells (MCs) further stimulating microglia activation, and causing focal brain inflammation...

I don't know about anybody else, but Dr Theoharides and Dr Afrin (another mast cell expert) are two people I would very much like to talk to. Unfortunately it will never happen, because I don't have hives or anaphalaxis, so I can't get a referral to a mast cell expert, even though the research shows that half of mast cell patients don't have those symptoms.

The idea of mast cell activation in ME fits in very nicely with Dr Naviaux's cell danger response theory. During his recent CDC talk he mentioned that cells under stress release ATP to signal other cells. Wanna guess one kind of cell that is activated by extracellular ATP? Yup. Mast cells.

I don't think that ME is a mast cell disorder, or that treating mast cell problems will lead to recovery. But if mast cell disorder treatments can help our symptoms while Dr Davis and team find a real treatment, that would be a very good thing indeed.

 

[NelliePledge]

@Ben Howell can you post a link to this so we can repost it to facebook groups, other forums?
cheers

 

[junkcrap50]

I have been learning about them over the past few months. The more I study the research, the more convinced I am that they play a major role in a subset of ME patients.

....

I don't know about anybody else, but Dr Theoharides and Dr Afrin (another mast cell expert) are two people I would very much like to talk to. Unfortunately it will never happen, because I don't have hives or anaphalaxis, so I can't get a referral to a mast cell expert, even though the research shows that half of mast cell patients don't have those symptoms.

The idea of mast cell activation in ME fits in very nicely with Dr Naviaux's cell danger response theory. During his recent CDC talk he mentioned that cells under stress release ATP to signal other cells. Wanna guess one kind of cell that is activated by extracellular ATP? Yup. Mast cells.

I don't think that ME is a mast cell disorder, or that treating mast cell problems will lead to recovery. But if mast cell disorder treatments can help our symptoms while Dr Davis and team find a real treatment, that would be a very good thing indeed.

Hear, hear! I have research MCAS, MCAD, and Mast Cells and have reached the same conclusion. I think that it plays a significant role in CFS. It don't think it is the underlying cause or mechanism, but has a big affect on our symptoms as well as our inflammatory syndrome and cascade. So, I too would like to know if there are any mast cell experts invited as well.

I believe that while a subset of CFS patients have obvious MCAS symptoms, there are many others that do not have typical MCAS symptoms while still having a mast cell issue. Having read Dr. Afrin's book, there are many cases that don't present as typical MCAS but have been successfully treated/cured with MCAS treatment.

Fascinating that mast cells are activated by extracellular ATP. I'll have to research that. Perhaps you could send a tip to someone so that gets to Naviaux. (Dr. Theo also believes mast cells play a big role in autism, basically mast cell activation of the brain. So there is some research overlap between these two.)

@jimells, I tried to make an appointment with Dr. Afrin, who didn't seem to need a referall or have a patient with hives/anaphylaxis, but he's booked up until into 2019.

 

[Ben H]

@Ben Howell can you post a link to this so we can repost it to facebook groups, other forums?
cheers

Hi @NelliePledge

It should be up here soon: https://www.omf.ngo/links-archives/

If not feel free to copy and paste etc! Be sure to let people know they can sign up to the Newsletter and get it via email

Thanks!

B

 

[Ben H]

Hey @Ben Howell

Do you know if any mast cell experts have been invited to the August symposium?

I have been learning about them over the past few months. The more I study the research, the more convinced I am that they play a major role in a subset of ME patients. Further, I have had substantial improvements in some symptoms since I started taking an antihistamine every day. For example, the hyperadrenergic POTS crashes and the itching on standing (or doing almost anything) have stopped.

Here is an excerpt from Theoharides et al, "Chronic Fatigue Syndrome, Mast Cells, and Tricyclic Antidepressants", 2005:


And here is another paper, "Brain fog", inflammation and obeisity: key aspects of neuropsychiatric disorders improved by luteolin", 2015:


I don't know about anybody else, but Dr Theoharides and Dr Afrin (another mast cell expert) are two people I would very much like to talk to. Unfortunately it will never happen, because I don't have hives or anaphalaxis, so I can't get a referral to a mast cell expert, even though the research shows that half of mast cell patients don't have those symptoms.

The idea of mast cell activation in ME fits in very nicely with Dr Naviaux's cell danger response theory. During his recent CDC talk he mentioned that cells under stress release ATP to signal other cells. Wanna guess one kind of cell that is activated by extracellular ATP? Yup. Mast cells.

I don't think that ME is a mast cell disorder, or that treating mast cell problems will lead to recovery. But if mast cell disorder treatments can help our symptoms while Dr Davis and team find a real treatment, that would be a very good thing indeed.

Hear, hear! I have research MCAS, MCAD, and Mast Cells and have reached the same conclusion. I think that it plays a significant role in CFS. It don't think it is the underlying cause or mechanism, but has a big affect on our symptoms as well as our inflammatory syndrome and cascade. So, I too would like to know if there are any mast cell experts invited as well.

I believe that while a subset of CFS patients have obvious MCAS symptoms, there are many others that do not have typical MCAS symptoms while still having a mast cell issue. Having read Dr. Afrin's book, there are many cases that don't present as typical MCAS but have been successfully treated/cured with MCAS treatment.

Fascinating that mast cells are activated by extracellular ATP. I'll have to research that. Perhaps you could send a tip to someone so that gets to Naviaux. (Dr. Theo also believes mast cells play a big role in autism, basically mast cell activation of the brain. So there is some research overlap between these two.)

@jimells, I tried to make an appointment with Dr. Afrin, who didn't seem to need a referall or have a patient with hives/anaphylaxis, but he's booked up until into 2019.

Hi @jimells @junkcrap50

Certainly there will be scientists there with understanding of mast cells and the disease mechanisms, but Dr Theo and Dr Afrin will not be as they were not invited.

I have read the research extensively of both the above (and others) since developing apparent MCAS and histamine issues, so know where you are coming from for sure. I'll mention it to Janet when we speak!


B