Giving Tuesday 2024: Help ME/CFS and Long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday and Cyber Monday. Every little bit counts, even if it's only $2 or $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did years ago with OMF (see below) so that $5 was automatically donated from me each month, and last year, I increased it to $10 a month. I don't have to think about it or do anything else, and my donation now adds up to $120 a year! It only takes a few minutes to either donate or set up recurring donations. And every little bit counts.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! All of the groups listed below that do ME/CFS research and/or support ME/CFS patients are now also helping those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing great work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingNovemberOMF - Thanks to generous gifts by multiple donors, every donation made in November (through today, December 3) is TRIPLED, up to $1,000,000! It's a great opportunity to make your money go farther! This organization does some outstanding, groundbreaking scientific research into causes, treatments, and cures for ME/CFS and long-COVID, with doctors, scientists, and researchers in Collaborative Centers across the globe. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - Donations made to Solve ME today will be doubled, thanks to donations from their Board of Directors! And today only, on Giving Tuesday, another generous donor has offered to also match donations up to $25,000, so donate today and your money will be tripled! This organization does a lot of work in both ME/CFS and long-COVID research and advocacy. You can read their newsletters here, including research updates and read more about their Solve Long-COVID Initiative here.
  
• Simmaron Research - Donate through their website and you can read all about their research projects here, including the first-ever biomarker-based treatment trial.
  
• #MEAction - This organization is focused on advocacy and outreach rather than on research, and they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, ways that anyone can help and take action, and you can donate to the organization here. They also have information on Long-COVID and ME. 
• American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) - they focus on meeting the needs of patients and caregivers through support, advocacy, and education. They have an informative newsletter, loads of useful information on their website, and advocacy programs. They also, uniquely, have a Financial Crisis Fund that I recently donated to, to help patients in dire need of food, housing, medical care, or other support. You can donate to AMMES here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.They also have an online shop featuring all kinds of books, t-shirts, cards, and more, with proceeds supporting the organization. And you can donate here.
  
• Emerge - The primary ME/CFS association in Australia provides research and patient support and advocacy. They are now also helping to support the Australian Collaborative Research Center of Open Medicine Foundation. Donate here.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. I have hosted fundraisers on Facebook for my birthday every year, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, and share your fundraiser with Facebook friends.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop! 

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site to search. And use that iGive link I posted in the previous line, and we'll earn an extra $5 for Solve ME!

To show you how well this works, my iGive page currently shows that I have selected Solve ME as my cause, that I have personally earned and donated $314.10 to them, and that they have earned a total of $6,611.39 from all supporters! Isn't that amazing? Over $6600 just from clicking a button before we shop online. Amazon is not a part of either program and got rid of its own charitable donation program last year, but you can find most other online stores on at least one of these.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients! 

 

Let me know if you know of other organizations or other ways to give that I missed here.

You can leave a comment below.

You can also connect with me on Facebook and Twitter and Instagram.

Recent Webinar: Comparing Immunological Signatures Between Long-COVID and ME/CFS

Earlier this week, I participated in a webinar hosted by the Solve ME organization (which, by the way, has loads of great resources for patients and for doctors, in addition to leading advocacy work and funding research). It was called Comparing Immunological Signatures Between Long-COVID and ME/CFS, which was of great interest to me since earlier research has indicated that immune dysfunction is at the heart of ME/CFS, and my own experiences have certainly borne that out.

You can check out the schedule of additional upcoming webinars here. On their YouTube page, there is a full playlist of all of their past webinars (see the playlist in the right sidebar). And on that page, you can watch the one I just watched, or I'll include it here:

It's an interesting talk, and they've already had some fascinating findings from the first phase of the study, looking at long-COVID patients. Much of it will be familiar to those with ME/CFS, as many of these are well-understood characteristics of our disease.

You'll hear toward the end the question that I asked, though unfortunately, the researcher didn't really understand what I was trying to get across (my fault - hard to explain through a typed comment). I do plan to follow-up with an e-mail to make sure they understand that earlier research showed a change in immunological signature between patients with ME/CFS less than three years and those sick more than three years, so this could confound their data in trying to compare long-COVID patients (by definition mostly less than three years) and pre-2020 ME/CFS patients.

They are still recruiting healthy controls and those with ME/CFS (pre-2020), so I'm sending my info to them to volunteer. Unfortunately, you have to be able to go in-person to the clinic in NYC (though if you live in the NYC area, within 50 miles of the clinic, they can provide a home visit instead).

Finally, a quick apology for not posting much here on the blog lately! I traveled a lot in April and have been pretty run-down the past two weeks. I still haven't had a full "can't get off the couch" crash since the start of the year 😀 but my energy was so low recently that I had trouble writing much. AND, we leave again tomorrow morning for my mom's for Mother's Day and her birthday. Next week, our son and his girlfriend will be staying with us and THEN, life should slow down for us for a while, and I can get back to more regular blogging.

Giving Tuesday 2023: Help ME/CFS and Long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday and Cyber Monday. Every little bit counts, even if it's only $2 or $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did years ago with OMF (see below) so that $5 was automatically donated from me each month, and last year, I increased it to $10 a month. I don't have to think about it or do anything else, and my donation now adds up to $120 a year! It only takes a few minutes to either donate or set up recurring donations. And every little bit counts.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! All of the groups listed below that do ME/CFS research and/or support ME/CFS patients are now also helping those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingNovemberOMF - Thanks to generous gifts by multiple donors, every donation made in November is TRIPLED, up to $500,000! It's a great opportunity to make your money go farther! This organization does some outstanding groundbreaking scientific research into causes, treatments, and cures for ME/CFS and long-COVID, with doctors, scientists, and researchers in Collaborative Centers across the globe. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - Donations made to Solve ME in November will be doubled, thanks to donations from their Board of Directors! And today only, on Giving Tuesday, another generous donor has offered to also match donations up to $25,000, so donate today and your money will be quadrupled! This organization does a lot of work in both ME/CFS and long-COVID research and advocacy. You can read their newsletters here, including research updates and read more about their Long-COVID Initiative here.
  
• Simmaron Research - Donate through their website and you can read all about their research projects here.
• #MEAction - This organization is focused on advocacy and outreach rather than on research, and they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, ways that anyone can help and take action, and you can donate to the organization here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.They also have an online shop featuring all kinds of books, t-shirts, cards, and more. And today through December 5 is their Christmas Challenge Big Give, with your donation matched.
  
• Emerge - The primary ME/CFS association in Australia provides research and patient support and advocacy. They are now also helping to support the Australian Collaborative Research Center of Open Medicine Foundation. Donate here.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. I have hosted fundraisers on Facebook for my birthday every year, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, and share your fundraiser with Facebook friends.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop! 

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site to search. And use that iGive link I posted in the previous line, and we'll earn an extra $5 for Solve ME!

To show you how well this works, my iGive page currently shows that I have selected Solve ME as my cause, that I have personally earned and donated $305.15 to them, and that they have earned a total of $6602.45 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online. Amazon is not a part of either program and got rid of its own charitable donation program this year, but you can find most other online stores on at least one of these.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients! 

 

Let me know if you know of other organizations or other ways to give that I missed here.

You can leave a comment below.

You can also connect with me on Facebook and Twitter.

 

ME/CFS (and Lyme) Awareness Day & Month: Help Spread the Word!

May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long, including:

• Check out the #MEAction website for their #MillionsMissing2023, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics (like the one above), and more. Check out all the options at the link, including the Activism at Home page and its toolkit.
  
• Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
• Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame. Twibbon also has a bunch of other options, including blue ribbons, from previous years.

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). We've gone from 2 million with ME/CFS in the U.S. in 2019 to more than 20 million (including many children) with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 21 years. If you see me out in the world or even just look at my photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see me out and about when I am having a good day, and even then, I need a LOT of extra sleep, I can't get through the day without a nap, I almost always have symptoms, and I have to carefully monitor and limit my activity. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people--and very few doctors--understand ME/CFS, so Awareness Month is really important. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more. If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far.

https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. Facts About ME/CFS by Phoenix Rising
3. The CDC's information on ME/CFS

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative
  
• Open Medicine Institute
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

Donate While You Shop: New Changes!

Amazon made a surprising announcement recently: as of February 20, they will be discontinuing their long-running AmazonSmile initiative. AmazonSmile allowed customers to select their own charity and then donated 0.5% of every purchase made to that charity. According to my latest update in December, Amazon sent a check to Solve ME/CFS (my selected charity on the site) for the last quarter of 2022 for $1367, and over the lifetime of the program had sent $24,159. As you can see, that's a substantial donation! However, Amazon said the program wasn't "having the impact we'd hoped." 

While this is a disappointing move from the world's top online seller, there are still other ways to donate to your chosen charity while shopping (which doesn't cost you anything extra):

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. Just register on each site and choose you charity. You can also earn by using the sites to search. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $296.31 to them, and that they have earned a total of $6583.88 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

I'm hoping that perhaps Amazon will sign up for one of these programs, but that remains to be seen.

For a list of great ME/CFS charities and more ways to support them, check out my Giving Tuesday post from November.

Exciting New ME/CFS and Long-COVID Research

There is SO much new and exciting research happening that will benefit both those of us who've had ME/CFS for years and newer patients just struck down with long-COVID more recently. One source for these new studies is the Open Medicine Foundation (OMF), which has been studying ME/CFS for years.

This fall, OMF hired me to do some freelance writing, reading scientific summaries of five of their new research projects and writing brief, easy-to-understand recaps for patients, their families, and OMF donors. I am happy to now share these summaries with you, each written for laypeople and each presenting some very exciting opportunities for new discoveries about our disease.

Currently, you can access all of these layperson summaries from OMF's News page, but here are some quick links - I promise all scientific terms are explained simply!

Neutrophil Study - this study by Ron Davis and his Stanford colleagues aims to identify neutrophil abnormalities in ME/CFS patients (and yes, don't worry - my summary at the link explains what neutrophils are!). This study could potentially lead to a new biomarker for ME/CFS.

Post-Exertional Malaise (PEM) - conducted by Dr. David Systrom, the top PEM expert, to better understand the causes and effects of PEM (aka exertion intolerance), a feature unique to ME/CFS that is often the most debilitating part of the disease.

Does ME/CFS Have a Biomolecular Signature? - the aim is to identify a unique combination of biochemical characteristics present only in ME/CFS, perhaps leading to diagnostic tests or treatments.

Does ME/CFS Change Molecularly Throughout a Day? - I'm very excited about this study because we patients know that our ME/CFS is constantly changing, day to day and hour to hour, but no one has studied these changes in such detail before!

Raman Spectrometry-Based Biomarker Discovery for ME/CFS  - this study aims to characterize the biochemical signature of ME/CFS, using a specialized kind of testing.

Aren't these exciting studies? I can't wait to hear the results! Scientists are really starting to dig into the nitty-gritty details of our disease.

I also helped OMF find families to interview for this excellent article, The Crisis of Sick Children with ME/CFS and Long-COVID, featuring families from our Parents' group on Facebook.

I think all this new research bodes well for a Happy New Year!

Giving Tuesday 2022 - Help ME/CFS and long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! Any donations to groups that do ME/CFS research and/or support ME/CFS patients will also help those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingTuesdayOMF - today is the final day of this generous gift by multiple donors, and every donation is TRIPLED, up to $500,000! It's a great opportunity to make your money go farther! This organization does some outstanding scientific research into causes, treatments, and cures for ME/CFS and long-COVID. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - An anonymous donor for Solve ME has pledged to match up to $25,000 in donations made TODAY.  This organization does a lot of work in both ME/CFS and long-COVID research and advocacy! You can read their newsletters here, including research updates and read more about their Long-COVID Initiative here.
  
• Simmaron Research - donate through their website and you can read all about their research projects here.
• #MEAction - this organization is focused on advocacy and outreach rather than on research, but they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, their home page includes ways that anyone can help and take action, and you can donate to the organization here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. They are now also helping to support the brand-new branch of Open Medicine Foundation - Australia. You can donate on their website at the link.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match up to $7 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in! More info on how it works and the matching gift today here.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site to search. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $296.31 to them, and that they have earned a total of $6583.88 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2021 says they sent a payment of $1338 to Solve ME/CFS for the quarter and that to date, the organization has received $22,792 from AmazonSmile! I added more to that yesterday. These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

ME/CFS (and Lyme) Awareness Day & Month: Help Spread the Word!

May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

• Check out the #MEAction website for their virtual #MillionsMissing2022, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics (like the one above - there are many to choose from), and more. Check out all the options at the link.
• Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
• Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame. Twibbon also has a bunch of other options, including blue ribbons, from previous years.

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). It's even more important this year, as we've gone from 2 million with ME/CFS in the U.S. to more than 15 million with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, plus he has 2 other tick infections, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 20 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap, we almost always have symptoms, and we have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. Crashes are often unpredictable - I am badly crashed today for no discernible reason. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far.

https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. Facts About ME/CFS by Phoenix Rising
3. The CDC's information on ME/CFS

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative (currently has a matching challenge, up to $500k to double your money!)
  
• Open Medicine Institute
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• Amazon Smile
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

Giving Tuesday 2021 - Multiply Your Donations!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30!

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingTuesdayOMF - today is the final day of this ambitious fundraising goal, and every donation is TRIPLED! It's a great opportunity to make your money go farther! The campaign has been going on since October 19, and they are cloe to meeting their goal of $1.5 million, which will all go toward scientific research into causes, treatments, and cures for ME/CFS. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - the Solve ME $1 Million Challenge - Members of the Solve ME Board have pledged to match up to $500,000 in donations. It runs through December 31. This organization does a lot of work in both ME/CFS research and advocacy! You can read their latest newsletter here and read more about the research this organization is supporting here.
  
• Simmaron Research - donate through their website and you can read all about their research projects here.
• #MEAction - this organization is focused on advocacy and outreach rather than on research, but they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, their home page includes ways that anyone can help and take action, and you can donate to their #MEAction's Giving Adventure. They are about halfway to their goal of $100,000 by the end of December.
  
• ME Association - Big Give Christmas Challenge runs from today through Tuesday, December 7, with a goal of raising 40,000 pounds. This is a UK-based organization that is focused on patient support and advocacy, as well as some research. Here's more about the organization and what they do, plus their current research projects.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. They are now also helping to support the brand-new branch of Open Medicine Foundation - Australia. You can donate on their website at the link.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match up to $8 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in! More info on how it works and the matching gift today here.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $293.44 to them, and that they have earned a total of $6527.70 from all supporters! Isn't that amazing? Over $6500 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2021 says they sent a payment of $1387 to Solve ME/CFS for the quarter and that to date, the organization has received $16,936 from AmazonSmile! I added more to that yesterday. These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

Giving Tuesday 2020 - Multiply Your Donations!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30!

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy - all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingTuesdayOMF - today is the final day of this ambitious fundraising goal, and every donation is TRIPLED! It's a great opportunity to make your money go farther! The campaign has been going on since October 20, and they have already surpassed $1 million, which will all go toward scientific research into causes, treatments, and cures for ME/CFS. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - the Solve ME Board $1 Million Double Your Money Challenge - Members of the Solve ME Board have pledged to add an additional $500,000 if donations add up to $500,000 by December 31. Your gift of $10 or $20 or $50 can help reach this threshold and unlock a million dollars for ME/CFS research and advocacy! You can read their latest newsletter here and read more about the research this organization is supporting here.
  
• Simmaron Research - donate through their website and you can read all about their research results and programs here.
• #MEAction - this organization is focused on advocacy and outreach rather than on research, but they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutelt essential to increasing research funding. Read more about them here, and you can donate to their Giving Season Campaign here.
  
• ME Association - Big Give Christmas Challenge runs from today through Tuesday, December 8, and supporters have pledged to double donations up to 11,250 pounds. This is a UK-based organization that is focused on patient support and advocacy, as well as some research. Here's more about the organization and what they do, plus their current research projects.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. They are now also helping to support the brand-new branch of Open Medicine Foundation - Australia. You can donate on their website at the link.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. For Giving Tuesday, Facebook has pledged to match $7 million dollars in donations! I have hosted fundraisers on Facebook for my birthday, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, share your fundraiser with Facebook friends, and then Facebook will double whatever donations you bring in!

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. To show you how well this works, my iGive page currently shows that I have selected Solve ME/CFS as my cause, that I have personally earned and donated $292 to them, and that they have earned a total of $6449 from all supporters! Isn't that amazing? Over $6000 just from clicking a button before we shop online.

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options). My quarterly report from AmazonSmile from September 2020 says they sent a payment of $1006 to Solve ME/CFS for the quarter and that to date, the organization has received $11,388 from AmazonSmile! These shopping links really pay off, with almost no effort and no cost to you.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

What YOU Can Do for ME/CFS (and Lyme) Awareness Day/Month!

May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

• Check out the #MEAction website for their virtual #MillionsMissing2020, with links to different ways that you can help to build awareness, from home, by posting on social media, joining virtual events online, downloading graphics, and more. Check out all the options at the link.
• Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
• Edit your profile pics on social media with a frame or a #millionsmissing filter. I am changing my Facebook profile to this one below, with an explanation of the things I am missing due to ME/CFS (including backpacking!). Here is this year's #MillionsMissing profile pic frame or this frame from a few years ago. Twibbon also has a bunch of other options, including blue ribbons, from previous years (I couldn't find the one I used still available).

As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). Most of you know that my son and I both have ME/CFS and Lyme, plus he has 2 other tick infections, but you may not know what that means, since the U.S. name, Chronic Fatigue Syndrome, is misleading. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 18 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap, we almost always have symptoms, and we have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. Crashes are often unpredictable - I am badly crashed today (flu-like aches, sore throat & exhaustion) from a 1-hour Zoom meeting and a short walk yesterday! A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far."

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. An Overview of ME/CFS by Phoenix Rising
3. The CDC's information on ME/CFS
4. Our public testimony on pediatric ME/CFS at the 2011 CFSAC meeting.

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative
• Open Medicine Institute
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• Amazon Smile
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

Double or Triple Your Giving This Season!

In this season of giving, there are two great deals going on right now to double or triple your contribution to ME/CFS research:

• Open Medicine Foundation Triple Giving Tuesday - from October 22 all the way until December 3, OMF will TRIPLE your contribution to ME/CFS research, thanks to several generous donors who offered to match donations up to $666, 666! The name refers to the annual tradition of Giving Tuesday, December 3 this year, the day after Cyber Monday, but donations will be tripled EVERY day between now and then. Just click the link to make your donation. It doesn't have to be a lot - every little bit helps, especially when it is tripled!
• Solve ME/CFS Initiative Double-Your-Impact Challenge - thanks to several anonymous donors, any donation you make to Solve ME/CFS from now until December 31 will be doubled, up to $750,000! They are hoping to meet a goal of $1.5 million in total donations by the end of the year. Just think of all the great research that can be done with that money!

These are two outstanding opportunities to make your money go further and give a gift that will help all of us this holiday season! Click the links to donate TODAY, watch your donation get doubled or tripled, and contribute to important ME/CFS research. You can even share the link with family and friends and tell them that THIS is what you want for your holiday gift.

Almost all of the amazing research breakthroughs in ME/CFS in recent years have come from private donations (and much of it from these two excellent organizations), so this is a great way to keep the science moving forward...for a happier New Year for all of us!

Happy Holidays and Happy Giving!

What YOU Can Do for International ME/CFS Awareness Day/Month!

May 12 is International ME/CFS Awareness Day, which unfortunately falls on Mother's Day weekend again this year when we are always away visiting my mom, so I am posting this information today to help you prepare. The entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month), so you can do a number of easy things to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:

• Two ways to help move ME/CFS research forward. From the Solve ME/CFS website (note that deadline for the first action listed has already passed).
• Check out the #MEAction website for a list of different ways that you can help to build awareness, even from your bed.
• Join the #MillionsMissing campaign for May 12, either in-person (there's a list of local events) or online.
• Edit your profile pics on social media with either a blue ribbon or a #millionsmissing filter. I am changing my Facebook profile to this one below, with an explanation of the things I am missing due to ME/CFS (including backpacking!). You can get the #MillionsMissing filter here with an app on your phone or on the Twibbon site. Twibbon also has a wide range of other options for ME/CFS awareness, including blue ribbons.

And I use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just close friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). Most of you know that my son and I both have ME/CFS (and he has Lyme plus 2 other tick infections), but you may not know what that means, since the U.S. name, Chronic Fatigue Syndrome, is misleading. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 17 years. If you see either of us out in the world or even just look at our photos on Facebook, you may think we live pretty normal lives...but that's why this is called an Invisible Illness. In reality, you only see us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap after lunch, we almost always have symptoms, and we both have to carefully monitor and limit our activity levels. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. A simple infection like bronchitis can knock us out for weeks. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - understand ME/CFS, so Awareness Month is really important to us. You can help to spread the word by sharing this post or clicking the link to learn more (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far."

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. An Overview of ME/CFS by Phoenix Rising
3. The CDC's information on ME/CFS
4. Our public testimony on pediatric ME/CFS at the 2011 CFSAC meeting.

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative
• Open Medicine Institute (click in the upper right corner to donate)
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• Amazon Smile
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information)

Support ME/CFS Research on Giving Tuesday!

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday & Cyber Monday. Every little bit counts, even if it's only $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did several years ago with OMF (see below) so that $5 is automatically donated from me each month - I don't have to think about it or do anything else, and my donation adds up to $60 a year! It only takes a few minutes to either donate or set up recurring donations.

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy - all are doing wonderful work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - Triple Tuesday 2018 - today is the final day of this generous gift - for every $1 you donate, an anonymous donor is tripling your gift! That means if you give $10, your donation triples to $30! They also have another special matching donation today only through Facebook, where Facebook has pledged to match the first $7 million in donations today ONLY (and they still have a ways to go). It's a great opportunity to make your money go farther!
• Solve ME/CFS Initiative - another chance to TRIPLE your donation! Through November 30, any amount you donate to Solve ME/CFS (starting at just $3) will be tripled through a matching donation from an anonymous donor! (note the triple matching gift isn't mentioned on the donation form itself, but I received an e-mail that explained it). You can read about their latest research breakthroughs here.
• Simmaron Research - donate through their website and you can read all about their research results and programs here.
• #MEAction - this organization is focused on patient advocacy rather than on research, but they are doing some great work! They also have a donor who will match up to $25,000 in donations on their website (and they have separate donation buttons for US and UK) or today only, Facebook is matching donations when you donate there.
• ME Association - A UK-based organization that is focused on patient support and advocacy. Here's more about the organization and what they do - click the donate text to set up a one-time or recurring donation.
• Emerge - the primary ME/CFS association in Australia that provides research and patient support and advocacy. You can donate on their website at the link.

And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop!  

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. And right now, iGive will donate an extra $3 for every new member that signs up or downloads their iGive button using that link above (sign-up is free and super-quick).

Amazon is not a part of either program listed above but has its own charitable donation program: AmazonSmile. Just sign up and choose your charity (most of those listed above are options).

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients!

TRIPLE Your Donation for ME/CFS Research Through 11/27

Exciting news! You have a chance to TRIPLE your donation to Open Medicine Foundation, now through Giving Tuesday on November 27, 2018. Two anonymous donors have stepped up to make this offer so that every donation that is made between now and then will be matched and tripled. That means if you donate $10, that automatically becomes $30, and $100 becomes $300. Every little bit always counts, but now you can make it count even more!

I just donated through Paypal, which took less than 2 minutes, to take advantage of the tripling, even though I am also signed up for $5 monthly donations all year round.

Open Medicine Foundation is doing some amazing work and has already moved research forward in ME/CFS, which was sorely needed. They are part of two large collaborative research centers, at Harvard and Stanford, run the End ME/CFS Project, and are funding many other exciting research projects.

Donate now before you forget!

And please help to spread the word!

ME/CFS Community Symposium Saturday

This Saturday, September 29, 2018, the Open Medicine Foundation and Stanford University will hold their Second Annual ME/CFS Community Symposium, featuring top experts and doctors in the ME/CFS world, presenting updates on research, diagnosis, and treatment. Anyone, anywhere in the world, can join in via Livestream. Details and registration for Livestream are at the link.

The Working Group already began meeting on Wednesday - 50 top experts from all over the world discussing the latest research in ME/CFS! They will provide updates to patients and anyone else who wants to join on Saturday at the Community Symposium.

I will be away and offline this weekend - finally getting to go camping after 2 cancellations this summer! - so let me know what you hear! The entire thing will also be recorded and available on YouTube afterward (link also on the Symposium website above).

Weekly Inspiration: ME/CFS Patients & Awareness Day

As I mentioned last week, I haven't been here on the blog this past month much, due to a crazy schedule and a huge milestone: my son's college graduation last week (he's the one with ME/CFS plus 3 tick infections). I have been working this week to catch up on everything, so this post is a little late, but I didn't want to skip it entirely.

Today's Weekly Inspiration is focused on YOU, ME/CFS patients all over the world who made this year's ME/CFS Awareness Day (and month) the biggest and best ever! Some summaries (and ideas for next year!):

#MEAction again spearheaded the #MillionsMissing campaign, which just keeps growing. Patients and their friends and families and supporters gathered in over 100 countries (!) around the world for over 300 separate actions, focused on bringing attention to ME/CFS and how its sufferers are missing out on their lives. You can read more about the 2018 campaign here, and you can read a detailed summary and see some amazing photos of the worldwide protests here, including online actions. Check out those photos - it is truly remarkable to see patients and their loved ones mobilizing all over the world!

Another organization, Solve ME/CFS, made an impact with a different kind of approach - ME/CFS Advocacy Day (May 15) on Capitol Hill here in the US, visiting offices of members of Congress and talking to them and their staff about ME/CFS and the urgent need for funding. This year, the group of patients, loved ones, Solve ME/CFS staff, and advocates met with 122 Congressional offices! That's a big leap forward from last year. You can read the summary and watch a short video about Advocacy Day here. Note that the video is not 100% accurate, in that it says that 2017 was the first time something like this occurred - Solve ME/CFS's precurser, The CFIDS Association, also hosted Lobby Days each year during ME/CFS Awareness Week. It's great to see this very valuable event occurring again. My husband, sons, and I participated in a Lobby Day with the CFIDS Association many years ago, and it was an incredible experience. If you or your loved ones can go next year, I highly recommend you do. You can also do what I did this year and participate from home by sending messages to your Congressional representatives.

Also note that you don't have to wait until May 2019 to help raise awareness of ME/CFS! The #MEAction website has a Take Action page all year-round that lists actions you can take TODAY to make a difference, usually from your own home - petitions to sign, letters to send, surveys to participate in, and more.

Congratulations to ME/CFS patients all over the world who participated in 2018 Awareness Day/Month activities, whether in person or online - you are making a difference! And today, YOU are my inspiration.

Two Surveys - Help ME/CFS Research from Home!

There are two online surveys for ME/CFS patients currently open for participation - this is a great way for even those who are homebound to help move ME/CFS research forward - even from your bed!

The first is sponsored by the excellent Massachusetts CFIDS/ME and FM Association and is a VERY brief survey on patient experience with commercial medical insurance companies - it is just a few questions (with room for explanation, if you like) and literally took me less than 5 minutes to complete.

The renowned Leonard Jason at DePaul University has already contributed a lot to knowledge of ME/CFS through his studies, and is now conducting one on Abnormal Response to Physical and/or Cognitive Exertion in ME and CFS Patients.  This is a longer and more in-depth survey, but Dr. Jason understands our limits and has designed it so that you can work on a bit at a time and save it to finish later.

You can do your part, right from your own couch or bed. Check out those two surveys today to help keep ME/CFS research moving forward!

URGENT: Tell Congress To Increase Funding for ME/CFS!

There is a big decision being made in Congress in the US this week over additional discretionary medical funding, outside of the NIH budget. Now is our chance to be heard and let our representatives know that ME/CFS is worthy of more research funding!

Solve ME/CFS Initiative has made it easy - the simple form at this link only takes a few minutes to complete and sends these important messages to your representatives in Congress. It really is very quick and easy - a great opportunity for you to make a difference, even if you are bedridden!

But hurry! The deadline is this week (I think Tuesday 3/13), so follow the link to fill out the form right now.

Let your voices be heard!