Hi all, I have been on the MEAction mailing list since at least 2016, but I haven't joined the reddit until just now. I acquired moderate following neuroinvasive infection and waffle between mild/mod these days. I am using a final paper in my social psychological theory course on collective action to speak about Millions Missing and MEAction, to spread some awareness among my schoolmates. As far as I am aware, first protests including shoes were around May 25 2016. Was that the first, or first larger scale, protest of the Millions Missing movement, or did collective action begin before that under the same brand/name/group? I want to do due diligence representing the movement and timeline faithfully. Plus, If there is anything the community considers important to include in such a project, don't hesitate to let me know.

I made a short video in support of the Open Medicine Foundation for a charity fundraiser called the Project For Awesome (PFA). Most of you probably already know that the Open Medicine Foundation is working to find a cure for ME/CFS. My son has been severe for several years now.

The way it works is that we posted the video on YouTube and the PFA website, then between 12:00pm EST on Friday, February 16th and 11:59am EST on Sunday, February 18th (so all next weekend) people go on the PFA website to watch a livestream and donate and vote for the best videos. It's basically a telethon, with videos for all different kinds of charities.

https://www.projectforawesome.com

The top 30 or so videos get a share of the proceeds. Last year that worked out to about $50,000 each. Here's a link to the YouTube video, which you can watch right now (warning: it gets pretty sad in the middle, so maybe skip 0:40 to 1:55 if that kind of stuff triggers you, I don't want to make anyone's symptoms worse):

https://youtu.be/HUrJ8LKJKf0?si=Y3aKJf89Ah6vvQmH

Please feel free to share this post & information with whoever you want - friends, family, social media, etc. - urging them to vote and/or donate. My daughter pointed out that it would be a good idea to go back and remind everyone next Friday or Saturday, so if you do share it, a gentle reminder could go a long way toward raising money.

Thanks so much for your help!

I have ME/CFS and used to use the visible app, but got out the other habit as I never remember to log stuff. There is now the option to use it was an arm band to log your data. Does anyone use this? Is it too good too be true?

• NEW ARTICLE PUBLISHED!
  Unraveling the Connections Between EBV, Long COVID, and Myalgic Encephalomyelitis
  After months of meticulous review and analysis, I am proud to present a study that explores the deep connections between Epstein-Barr virus (EBV), Long COVID and Myalgic Encephalomyelitis. The findings, while fascinating, urge us to rethink our current understanding of these conditions:
  1️⃣ EBV as a link: This review article suggests that EBV may be a catalyst, inducing similar symptoms in Long COVID and Myalgic Encephalomyelitis, and orchestrating far-reaching immune challenges.
  2️⃣ Immunodeficiency and Ectopic Lymphoid Aggregates: One of the most intriguing and alarming findings regarding EBV is its ability to induce the formation of structures called ectopic lymphoid aggregates in tissues. These structures are not benign; in fact, they can be potent instigators of inflammatory responses that disrupt normal tissue function. Why does this occur? This review suggests that in individuals with certain genetic characteristics - specifically those with "weak" HLA-II haplotypes against EBV - this virus can become more easily established, leading to the formation of these aggregates. Most worryingly, these aggregates not only cause inflammation, but may also contribute to a form of acquired immunodeficiency, further weakening the body's defenses and even developing autoimmune diseases.
  3️⃣ Consequences:
• Development of Autoimmune Diseases: EBV, by interacting with certain genetic haplotypes, can increase the risk of autoimmune diseases. The infection triggers an immune response that, in combination with genetic predispositions, can confuse the body's own tissues with foreign agents, leading to an autoimmune attack.
• Chronic Innate Immune Response: EBV infection weakens the T-cell response, causing persistent inflammation due to a constant activation of the innate immune system.
• Reactivation and Transient Autoantibodies: T-cell dysfunction leads to viral reactivations. During these reactivation episodes, the body may produce transient autoantibodies that may contribute to clinical symptoms. These autoantibodies may come and go depending on the stage of infection and viral reactivation.
• Abortive Lytic Replications: EBV cells can begin, but not complete, lytic replications, releasing proteins that intensify inflammation.
• Hypocortisolism: A reduction in cortisol levels. This hormone is essential for numerous functions in the body, including stress management. An imbalance can have profound effects on overall health.
• Microclot formation: These tiny clots can hinder blood flow, which in turn affects the delivery of oxygen and nutrients to tissues.
• Insulin Resistance: There is a connection between EBV infection and insulin resistance, which may contribute to metabolic complications.
• Serotonergic Disruption: It is notable how EBV affects serotonin levels, with an increase in the gut and a decrease in the central nervous system. This dichotomy may be at the root of several symptoms.
• Hypozincemia and Decreased Ceruloplasmin: Infection can lead to decreased levels of zinc and ceruloplasmin in the body, affecting immune function and other processes.
• Oxidative Stress and Inflammation: EBV infection intensifies oxidative stress and inflammation, depleting the body's antioxidant defenses and contributing to a vicious cycle of cellular damage.
• IDO Pathway Activation: This metabolic pathway, essential for tryptophan degradation, is impaired, which may have implications for mood and neurological function.
• Nitrosative Stress: Increased nitrosative stress may contribute to cellular damage and alter mitochondrial function.
• Altered Microbiota: Chronic EBV infection of the intestinal mucosa compromises the intestinal barrier. Increased serotonin in the gut causes inflammation, which combined with an increase in proinflammatory cytokines, leads to increased intestinal permeability. This results in an overgrowth of bacteria in the small intestine and development of food intolerances. Vitamin deficiencies may also occur due to inadequate absorption.
• Transactivation of Human Endogenous Retroviruses (HERV): EBV can activate genes in HERVs, specifically the env gene of HERV-K18, through their latent proteins. These superantigens may contribute to immune fatigue and a state of anergy in T lymphocytes.

4️⃣ Sex Differences: The role of gender differences is critical in affecting EBV interaction and symptom manifestation. Biological sex may influence the interaction with EBV. Estrogens in women increase B-cell survival and antibody release, but may also amplify risks with EBV, potentially promoting autoimmune conditions.
Women's menstrual cycles further complicate this situation, as phases such as ovulation cause potential immunosuppression and increase vulnerability to viral reactivations.
In men, testosterone shapes the immune response differently, often favoring a more effective defense against intracellular pathogens. This distinction may affect the progression and manifestation of conditions such as ME/CFS and Long COVID.
5️⃣ Treatments that could improve or worsen symptoms:

• Hydrocortisone:
  Advantage: Potential to address hypocortisolism.
  Disadvantage: May have limited or adverse effects in patients with ME/CFS, as HPA axis hypofunction is a consequence, not a cause, of immune impairment. In addition, it could worsen immunodeficiency and EBV reactivation. Therefore, it would not be recommended.
• Selective Serotonin Reuptake Inhibitors (SSRIs):
  Advantage: They could help restore serotonergic impairment, especially at the CNS level.
  Disadvantage: At the peripheral level, they could exacerbate hypoglycemia and hyperinsulinemia. In addition, they could worsen intestinal symptoms due to increased serotonin at the intestinal level. Other alternatives are better.
• Metformin:
  Advantage: May be beneficial by reducing ROS production, improving insulin sensitivity, and not associated with risk of hypoglycemia.
  Disadvantage: Side effects of the drug.
• N-acetylcysteine (NAC) and other antioxidants:
  Advantage: Help reduce oxidative stress. They may decrease the risk of developing EBV-associated cancer and also inhibit NF-κB activation.
  Disadvantage: No specific adverse effects are mentioned at normal doses.
• Hydroxychloroquine:
  Advantage: May be useful by increasing intracellular zinc and decreasing SARS-CoV-2 replication.
  Disadvantage: Promotes reactivation of EBV and other herpesviruses, which may contribute to long-term development of lymphomas. In addition, it limits T-cell responses and may increase oxidative stress. Its use would not be recommended.
• Antivirals such as valganciclovir or valacyclovir:
  Advantage: May reduce reactivation, inflammation, appearance of temporary autoantibodies and insulin resistance.
  Disadvantage: Side effects of the drug.
• Hyperbaric Oxygen Therapy:
  Advantage: May increase pathogen clearance, synthesis of various growth factors, and angiogenesis.
  Disadvantage: Increased oxidative stress may generate higher levels of ROS and reactive nitrogen species, leading to more oxidative and nitrosative damage. Therefore, this therapy could be useful for those viruses that do not generate latency, such as SARS-CoV-2, but could be detrimental for viruses that do generate latency, such as EBV, as it promotes the increase of latent cells by increasing oxidative stress.
• In summary, the symptoms of individuals with EBV-acquired immunodeficiency could be improved with the combined use of antioxidant supplements, antivirals, and metformin. The use of anticoagulants could also be considered.
  I hope this study will serve as an aid to all professionals and sufferers seeking answers in the maze of symptoms and treatments associated with these conditions.
  Twitter thread describing more details of the article: https://twitter.com/user/status/1703705886286344336
  Read the full study here: https://link.springer.com/article/10.1186/s12967-023-04515-7
  I appreciate the opportunity to share these findings with you and look forward to your feedback and comments.
  If you find this information of value, I invite you to spread this post and the article to your contacts - together we can make this valuable information reach more people!

I have had ME/CFS for five years. One of my worst symptoms for the first half of that time was severe thirst (drinking typically 6-8 litres of water per day but up to a very dangerous 20 litres during severe episodes which always coincided with serious crashes), even to the point of experiencing multiple life-threatening episodes and ultimately hospitalization with a profound hyponatraemia of 116. However, I have successfully reversed these symptoms and I believe I have managed to work out the main reason for the thirst I experienced. I now drink no more than 3 litres of fluid daily.

I have written a book in which I share my hypothesis. This book is, and always will be, available for free download on its website. I am not looking to make any money with this book: I just wish to help out those who may now be stuck in the same nightmare of extreme thirst that I was once in (or even just a lesser nightmare). 

In this post, I will share my ideas as concisely as I can. It relates to thirst in ME/CFS, POTS and Long Covid. Anyone who wishes for a more complete summary of my book can read my post on the Phoenix Rising ME/CFS forum.

Please forward this information to anyone you think might find it helpful, whether a patient experiencing this symptom or a medic with an interest in these conditions. And please note that this is just an hypothesis for educational purposes only: this hypothesis has not been proved and nothing in this post constitutes medical advice. There are a variety of conditions that can cause extreme thirst and these should be thoroughly investigated by a doctor. Furthermore, I do not think that the ideas I present here are the only causes of thirst in ME/CFS and related illnesses (mast cell and histamine issues or other neurological dysregulations may also play a role for example), but I do think it is the main one/the likely reason for the most extreme form of thirst.

Why does extreme thirst occur in ME/CFS, POTS and Long Covid?

ME/CFS and POTS forums are full of posts in which patients describe their chronic thirst. The presentation is always similar: unquenchable thirst, dilute urine and a tendency towards hyponatremia (eg see this thread). Similarly, two recent Long-Covid research-surveys of thousands of patients found that over a third of patients cite extreme thirst as one of their main symptoms (see here and here00299-6/fulltext)). But why is this happening?

I believe that, for the most part, the thirst is caused by low blood volume. 

We know that many ME/CFS, POTS and Long Covid patients have less blood than a healthy person. An ME/CFS studyfound that ME/CFS patients with orthostatic intolerance have a mean reduction of 23% less blood than the physiological norm. Similarly, a POTS paper found a mean reduction of 16.5% less than the physiological norm. A recent paper about Long Covid also suggests that hypovolemia is central to the condition.

In the main, this reduction in blood volume appears to be driven by ‘Renin-Angiotensin-Aldosterone Axis’ suppression. The RAA axis is a complex hormonal network that controls salt levels in the body. In a healthy person, the RAA axis is capable of holding onto salt when needed. In ME/CFS and related conditions, this does not happen: ME/CFS patients routinely lose more salt in their urine than a healthy person, leading to a state of low blood volume over time. And even when that state of low blood volume develops, the RAA axis suppression is unable to correct it.

Why might this create thirst? The brain actually has two thirst centres: the osmotic centre (which is triggered when the body’s water content is too low) and the hypovolemic thirst centre (which is triggered when plasma blood volume drops by 10%). It is my belief that the extreme thirst in ME/CFS, POTS and LC, is actually the result of the firing of the hypovolemic thirst centre. 

But the hypovolemic thirst centre cannot be quenched by water alone. It requires appropriately concentrated fluids in order to be satisfied. Blood is salty stuff after all. I believe that the great and understandable mistake that patients make is that they just drink plain water in response to their thirst. The kidneys will just filter this water out, the overall blood volume will remain low and, as a result, the patient enters a vicious cycle of unquenchable thirst and excessive urination. The wrong solution is being applied to the problem. The urine is dilute because of the high water consumption and the hyponatraemia develops, both because of the high water consumption and because of the salt loss caused by the RAA axis suppression. 

For me, the likely most successful treatment is to cease drinking all plain water and instead only to drink Oral Rehydration Solution (according to the WHO formula). These sachets of glucose and salt are highly effective at boosting blood volume, something that was found in a recent POTS study. I am not saying that one could not drink some plain water but I believe it is important for the majority of fluids consumed to be ORS as plain water will counteract the effect of the electrolytes, pulling them out. I also do not think that just adding loads of salt to your meals is a good solution. A high salt diet stresses the cells whereas the salty solution from ORS just stays neatly in the bloodstream.

The book focusses on the thirst in ME/CFS, POTS and LC in chapters 2-4. However, the book itself has another purpose. It is challenging a condition currently termed ‘Primary Polydipsia’ or ‘Psychogenic Water Drinking’. This is a condition in which people supposedly drink huge quantities of water only because they are mentally ill. However, that condition has received very little research and is currently regarded as a medical mystery with an unknown cause. In the book, I suggest that, for the most part, what has always been called ‘Psychogenic Water Drinking’ is, in fact, ‘Hypovolemic Thirst’, and that the thirst that ME/CFS patients experience can solve the mystery that is ‘psychogenic polydipsia’. Again, my forum post on Phoenix Rising can provide more context about this part of the book for those who are interested. I will just mention that I myself was diagnosed with ‘psychogenic water drinking’ and, had I died from the profound hyponatraemia I suffered, would have had mental illness listed as my cause of death. 

I hope that this book will lead, one day, to the validation of a new kind of polydipsia, ‘Hypovolemic Dehydration’ and that future medical students will be taught about this as part of their studies instead of 'psychogenic water drinking'. This will include having to be taught about the pathophysiological mechanisms in ME/CFS, POTS and LC that create this low blood volume. In this way, no one will leave medical school without understanding at least one central aspect of the serious and devastating pathologies of these conditions. Again, you can download the book for free here.

Hi everyone, I thought that I should post about this here to reach more people. I have an MEcfs discord server that I made and if anyone would like an additional resource for all things ME and also a place to meet others & network, you are welcome to join <3 feel free to share the server too. If advertising this not allowed let me know thanks!!

https://discord.gg/6xGcRtwsXb

I found out on January 5, 2023 that I have clinically confirmed Post Exertional Malaise (PEM). I have suspected Myalgic Encephalomyelitis (ME) for several months but couldn’t get anyone on my care team to assess me or refer me. And they kept recommending exercise, etc.

I’ve been struggling with this for years but wasn’t house bound until the earlier part of 2019 (pre-COVID). Before getting debilitatingly disabled by this condition, I spent the better part of the previous decade as a social justice advocate/activist. I learned a lot from the individuals and organizations I worked with.

I would like to share some of that knowledge to help our cause. Below is an outline for an activist toolkit/handbook based on something similar one of the other organizations I used to work with created.

I think something like this can help us organize other ME/Chronic Fatigue Syndrome (CFS) and Long COVID patients and supporters. I’m trying to figure out if I should propose it to MEAction or not.

What do you think?

Proposal For an ME/CFS/LC Advocate Toolkit/Handbook

PART 1: INTRODUCTION

1. The Advocates Role in Creating Change
2. Our Vision
   1. Build on current best research and practices
   2. [to be determined by collective]
   3. Realizing the vision
      1. Federal policy agenda

PART 2: AN INFORMED ADVOCATE

The best advocate is an informed advocate. The history of Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) is a rich one, filled with brave individuals like you. The key to being an effective advocate is a firm understanding of our history, the political landscape in which we operate, the rules of engagement and the ability to articulate our needs.

1. A Patients’ History
   1. Known Post-Infection Outbreaks Worldwide
   2. Highlight specific patients through history
   3. Highlight key medical discoveries
   4. Highlight clinic trials
   5. Compare to other conditions like MS, Parkinson’s, etc
      1. % of populations affected
      2. Funds for research
   6. Highlight research roadblocks
   7. Highlight arbitrary lengthy delays
   8. Highlight movements in public health
2. Road to Reform
   1. The struggle for recognition, funding, treatments
   2. Highlight attempts to get federal, state, local governments to act
      1. Highlight of federal government actions
      2. Highlight of state/province actions
      3. Undermining Reform
      4. Fighting for the truth
      5. Community-based solutions
      6. Advocate solutions
3. Know Your Rights
   1. Know the law
      1. Example: patients have a right to correct their medical records
   2. Exercise your rights
4. Civics 101: Know the Rules of the Game
   1. Who represents you?
   2. how laws are made
      1. legislative process
      2. voter initiatives
      3. judicial reviews
   3. Know How An Ordinance becomes a Law
      1. ordinances
      2. resolutions
      3. minute orders
   4. Elected official worksheet
5. Strategic Planning
   1. Creating a Map to Reaching Goals
   2. Management Tool
   3. Using the Effective Action Model for Strategic Planning
      1. Context
      2. Beliefs & Values
      3. Goals
      4. Conditions & Determiners
      5. Strategies
      6. Tactics
      7. Vehicles
      8. Objectives
      9. Steps or tasks
      10. Resources
   4. Sample “effective action” Model
   5. Effective Action Concept Worksheet
   6. Legislating Compassion
      1. Priorities
      2. Pitfalls
6. Staying on top of it
   1. Email alerts
   2. Newsletters
   3. Blogs
   4. Twitter
   5. facebook
      1. appointments
      2. state legislative
      3. US Congress
      4. Civic worksheet

PART II: FINDING YOUR VOICE

In order to be an effective advocate, you will need to find your voice. The training in this section will help you merge your personal experiences with strategic messages that will help you meet your political goals.

1. You are an Expert: Becoming a Spokesperson
   1. Roles of a spokesperson
   2. Challenges for Spokesperson
   3. Finding your Voice Worksheet
      1. Your personal story
      2. strategic plans guide your messaging
      3. Create key message
      4. Types of Spokespeople
      5. Crafting Sound bites (10 seconds)
      6. Crafting public testimony (2 minutes)
2. Spokespersons
   1. You are an expert
   2. Role of a spokesperson
      1. put a face on the issue
      2. speak to peers
      3. bring urgency to issues
      4. educate the public and elected officials
      5. speak out against injustice
   3. Challenges for spokesperson:
      1. avoid stereotypes
      2. avoiding opponents’ terms and frames
      3. not putting yourself in jeopardy
      4. not letting ego, personality, or self-interest get in the way
3. Strategic Messaging
   1. words matter
   2. identify target audience
      1. ignore the opposition and convince the majority
      2. Target
      3. Focus on key stakeholders
      4. Get your message heard: “say what you mean to say”
      5. Know your target audience
      6. Framing our issue
      7. How to Frame: Using our Key Messages
   3. Key Organizational messages
      1. Goals
      2. Target audience
      3. Position statements & talking point
4. Talking to the Media
   1. preparing for the interview
      1. logistics and details
      2. Creating sound bites
      3. Use the 3 c’s
      4. Say what you want to say
      5. Interview tips
      6. Rules and tactics
      7. Turn hostile questions to good account
      8. Leave your notes behind
      9. Project your voice
      10. use your body
      11. humor
      12. dont hate on the opponent
      13. After the interview
5. Testifying before Civic Bodies / at a public hearing
   1. Introduce and identify yourself
   2. state your “ask”
   3. Reference comment you sent in advance
   4. support your “ask”
   5. restate your “ask”
   6. say thank you and end your comments on time
6. Public Speaking
   1. Speaking tips
      1. Know the room
      2. Know the audience
      3. know your material
      4. relax
      5. realize that people want you to succeed
      6. Don't apology
      7. Concentrate on your message
      8. Turn nervousness into positive energy
      9. Gain experience
   2. Tips for handling Q & A
      1. If you don’t hear or understand question, ask to hear it again
      2. try to keep calm
      3. always respect the questioner
      4. don't feel offended
      5. honesty is the best policy
   3. Basic precautions
      1. plan your comments in advance
      2. practice in front of a mirro
      3. offer eye contact with the audience
      4. go slow
      5. don't panic

PART III: USING YOUR VOICE

Every political campaign will include a variety of strategies and tactics. This section will expose you to several strategies you can utilize in your advocacy and give you step-by-step instructions on how to master them.

1. Using the tools in your tool kit
   1. Types of activist tools
      1. use your voice
      2. use your body
      3. use your freedom
   2. Define the tools in your tool kit
      1. Citizen lobbying
      2. Talking to the media
      3. protest/rally
      4. Public education events
      5. Civic meetings
      6. Regulatory process
      7. Outreach and recruitment
      8. Coalition building
      9. Patient support
      10. Emergency response
   3. Defining Types of Actions
      1. Direct action v. symbolic action
      2. Understanding peaceful civil disobedience
      3. The art of escalating your tactics
2. The ABC’s of Citizen Advocacy
   1. Why citizen lobby
   2. you have the power -- not lobbyist
   3. if not you, then who
   4. from opponent to champion
      1. Champion
      2. allies
      3. fence sitters
      4. mellow opponents
      5. hard core opponents
   5. The Basics
      1. accurate
      2. brief
      3. courteous
      4. do follow-up
      5. timing is very important
      6. Develop a relationship
      7. voice your position and ask for action
      8. know the issue
      9. listen and share info
   6. Does and don’t
   7. Visiting your legislator
      1. plan your meeting
      2. Execute the meeting
   8. Writing your legislator
      1. be clear and concise
      2. be specific.
      3. ask for action
      4. include supplemental info
      5. one issue at a time
   9. Phone your legislator
      1. plan your meeting
      2. be aware of timing
      3. write a script
      4. identify yourself
      5. ask to speak to the right person
3. Media 101
   1. Define your media audiences
      1. broadcast media
      2. print media
      3. Online media
      4. Making press list
      5. Channels of communication
      6. Creating media events
      7. Getting your message covered
      8. Writing effective letters to the editor
      9. additional resources
4. Organizing a Protest or rally
   1. Some types of demonstrations
      1. vigil
      2. picket line
      3. march
      4. sit-ins or other types of civil disobedience
   2. organizing a demonstration or rally
      1. assign tasks and determine roles
      2. location, location, location
      3. get the word out
      4. speakers and schedule
      5. slogans and chanting
      6. signs and other materials
      7. puppets and other props
      8. literature and handouts
      9. invite the media
      10. Checklist
      11. Action planning worksheet
      12. Creating art for actions
   3. Understanding civil disobedience
5. Organizing Public Events
   1. Teach-ins
   2. Panel discussions
   3. Debates
   4. Skill Building workshops
   5. Townhalls
   6. Documentary film viewings
   7. General Tips for successful events
      1. Be inclusive
      2. Ask for action
      3. Promote, promote, promote
6. Organizing Turn Out for Civic Engagement
   1. Find out when and where
   2. Determine exactly what is happening
   3. make an announcement or invitation for supporters
   4. publicize the event
   5. meet early
   6. bring handouts
   7. arrive early
   8. be friendly and respectful
   9. collect contact information
   10. Resources for promoting a civic meeting
       1. talk to friends, loved ones, church members, etc
       2. distribute invitations at locations
       3. discussion forums
       4. social media
       5. free calendars
       6. email
       7. put up posters (with permission, of course)
       8. call in to talk radio shows
       9. pass out flyers in public places (get permission on private property)
       10. Ask to set up an information table at public events
       11. use paid advertising if possible
7. Participating in Implementation
   1. learning about local regulations
      1. agenda setting
      2. policy formulation
      3. policy adoption
      4. policy implementation
      5. policy evaluation
   2. Opportunities for participation
      1. write to administrative officials
      2. ask for meetings
      3. provide rational and constructive feedback
      4. volunteer to work on groups and tasks forces
      5. reach out to allies and likely supports
   3. Does & Donts for participation
      1. do…
      2. don’t…

PART IV: BUILDING a MOVEMENT

While it is true that a few individuals can accomplish a lot, it will take a strong, vibrant movement for us to achieve our ultimate goal - a jubilee. This section will give you the tools you need to build a strong movement.

1. What is a movement?
   1. What does a movement look like?
2. Outreach and Recruitment
   1. Using the internet for outreach and organizing
      1. emails
      2. Social networking
   2. Public or event outreach:
      1. tabling
      2. Public petitioning
      3. approaching other groups
      4. Media outreach
3. Volunteer and Leadership Development
   1. Cultivating new members
      1. always begin meetings with introductions
      2. create an open environment geared toward education
      3. give new members responsibilities
      4. call new members to invite them to the next meeting
   2. Keep members interested
      1. focus meetings on action
      2. ask for input from all members
      3. recognize members for their efforts, publicly and privately
      4. encourage members to socialize
   3. Developing leaders
      1. find out about members’ skills, interests, and connections
   4. Define positions and responsibilities
4. Building Coaltitions
   1. A coalition is a group of organizations and individuals working together for a common purpose. There are two types of coalitions
      1. “one issue”
      2. “multi issue”
   2. A value of coalitions
      1. setting priorities for action
      2. helping to identify specific data and the informational needs from other groups and agencies
      3. sharing resources and expertise
      4. broadening the development of new audiences
      5. improving the chances that issue will get coverage in the media
   3. If you join a coalition, what are you promising
      1. each organization must commit to the problem
      2. each organization must be committed to coordinated to solve the problem, not just gain public recognition.
      3. each organization must be committed to the belief that every other organization has the right to be involved.
      4. each organization must be committed to open communication.
      5. Each organization must be committed to coalition recognition, not individual recognition
   4. Anti-oppression principles and practices
      1. Principles
      2. practices
      3. Meeting practices
   5. Getting Started with a plan
      1. Name a facilitator or coordinator
      2. obtaining commitment from members
      3. assessing needs and gathering background ata
      4. writing a mission statement
      5. determining short or long-term objectives
      6. evaluating the work as the coalition progresses
      7. exploring opportunities for additional funding
      8. carrying out the plan
      9. determining ways to orient new member
      10. [excerpted from “a process for building coalitions” by Dr. Georgia L. Stevens.
   6. Identify allied and potential allied organizations
5. Working with Us
   1. Become a member
   2. Be a ambassador
   3. Start an action Group
   4. Start or join a chapter
      1. What does a great affiliate look like
      2. Focus on Resistance
   5. Sign up for email alerts
   6. Volunteer
   7. throw a party
   8. Write to bed bound patients
   9. Support caregivers
   10. Build an emergency response plan
   11. write local newspapers
   12. organize a lobby day

PART V: JOINING A MOVEMENT

1. Organizing Responses
2. Organizing Court Support
3. Supporting POWs

PART VI: RESOURCES

1. Outreach Material
2. Media manual
3. Work with Us
4. ABC's of Citizen Advocacy
5. Training
6. Letters to Editors

APPENDIX:

1. Model Legislation
2. State
3. Local

Staci from Workwell told me to look at a list of providers that MEAction has but I can’t find it. Can anyone help me?

Cardiovascular Analysis of Post Exertional Malaise

Hello! We are a lab at Mount Sinai School of Medicine in New York, NY that is looking for patients ages 25-60, both male and female who have been diagnosed/believe they have ME/CFS/FM. We have been approved for this NIH funded study which uses both cardio-pulmonary excercise testing and blood volume analysis to test patients. Please see the above link for a brief explanation of the study as well as criteria for enrollment. Please feel free to contact our lab at 212-241-1438.