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!

Chronic Illness Vlog 11/21/22 - Trying Treatment Changes

Not much time this week. We're rushing to get ready for a trip to my hometown (Rochester, NY) for Thanksgiving. I'm not in great shape, but I'm not in awful shape, either. I made a change today that I hope will help me get through the long holiday weekend!

And that's a lot of what last week's Chronic Illness Vlog is about - making changes in my treatments. Happily, the result, as you'll see here, is that I am finally feeling better and able to do more. You can watch the latest vlog on Youtube or below:

I'm a bit anxious about the trip and how I've been feeling, but I'll feel better once we are out the door and on the road tomorrow (about a 7-hour drive). I'm already very happy to have our older son home with us and looking forward to spending several days with all of us together. I'm also looking forward to seeing some extended family, though I'm nervous about COVID, and social gatherings exhaust me.

Hope that all my U.S. readers enjoy a wonderful Thanksgiving!

And please tell me about YOUR week in the comments!

New Diagnostic Codes for ME/CFS and Long-COVID Now Active!

I thought I already wrote about this exciting advance for patients of ME/CFS and long-COVID, but I can't find it among my blog posts. Well, it's been a rough few months--it's entirely possible I never got to it! So, here's the big news:

Effective October 1, updates to the ICD-10-CM, the U.S. version of the International Classification of Diseases, will include ME/CFS--using both terms, myalgic encephalomyelitis and chronic fatigue syndrome--and also long-COVID.

ICD codes are the diagnostic codes that doctors must use each time they consult with a patient--insurance companies require them. In the past, doctors had to fit us ME/CFS patients in wherever they could. Often that meant using "chronic fatigue--unspecified," which of course was not accurate. Old ICD codes also referred to myalgic encephalomyelitis as "benign'!

These diagnostic codes that doctors assign are recorded and tabulated, and knowing how many patients suffer from a particular disease can affect funding, allocation of resources, and attention from the NIH and other bodies. No wonder ME/CFS has never gotten any significant government funding.

You can read a summary of the new codes and the changes made here (put together by #MEAction).

I printed a copy of that summary and gave it to each of my doctors, asking them to share with all their staff and to use the new code (G93.32) for my son and I and any other ME/CFS patients and pointing out the new long-COVID codes (either G93.3 or U09.9).

This is an important and exciting step forward for all ME/CFS and long-COVID patients. Many of us have waited decades for this!

So help to spread the word!

TV Tuesday: So Help Me Todd

I included trailers for several new TV shows we wanted to try in my Fall 2022 TV Preview post, and one of our favorites from that group is So Help Me Todd. We are really enjoying this crime drama that mixes in family and a great sense of humor.

Marcia Gay Harden plays Margaret, a successful lawyer at a top law firm in Portland, OR. She is always dressed beautifully and perfectly poised. Her son, Todd (played by Skylar Astin), is her opposite, living life from the seat of his pants and the black sheep of their very accomplished family. Todd lost his private investigator license for some illegal activities and has been a bit lost in the two years since. His mother is constantly harping on him to grow up and live more like an adult, but this time, she might actually have a good idea. After Todd helps her, both with a legal case she's representing and a personal matter, she hires him as an investigator for her firm, though the firm's existing investigator, Lyle (played by Tristan J. Winger), never lets Todd forget he's the top dog. In between solving cases for his mother--and gradually earning her respect--Todd is also spending more time with his family, including his sister, Allison (played by Madeline Wise), her husband, his brother-in-law, Chet (played by Thomas Cadrot), and his niece, Clem. As Todd becomes closer to his family, he solves case after case and becomes an asset to Margaret and her firm. And maybe Margaret even learns to loosen up a bit (maybe).

This show has all the ingredients we love in a TV series: mystery, suspense, family drama, and a wonderful sense of humor. The two lead actors--Harden and Astin--are outstanding in their roles, and the supporting actors are all excellent as well. Each episode deals with a different legal case that Todd helps to investigate, usually with a twisty plot and plenty of surprises. The relationship--and the banter--between Todd and Margaret is fun and amusing, but there is also a sense of warmth as the two of them and the rest of the family grow closer to each other. We've watched seven episodes so far (#8 comes back in December), and we look forward to it every week. No word yet on whether this wonderful show will come back for a second season, so be sure to check it out soon so the decision-makers know that people are enjoying it!

So Help Me Todd airs on CBS Thursday nights. We watch it On Demand, and it is also available through Paramount+, Hulu, CBS TVE, Pluto TV, and other popular streaming outlets.

Outdoor Nature Vlog & Good News!

The good news is that I finally seem to have come out of this months-long relapse that has trapped me on the couch since August! I made one medication change three weeks ago and two more last week, and I felt really good most of this week. I am pretty much back to my normal baseline, though my stamina is low after not doing anything for months. But I took my first walk in over 3 months this week, with no crash afterward! It's been a complicated situation, so I will write a longer blog post next week, explaining what helped me.

Best of all, we finally got our camper back from the repair shop (it had been hit in a traffic accident), just in time to take advantage of the last warm weather of the year. We went camping for two days to Trap Pond State Park in southern Delaware, and I was even able to manage kayaking. Trap Pond is the site of the northernmost-occurring natural grove of cypress trees, which are beautiful. The weather was great, and the natural beauty was stunning. We could see the lake/pond right from our camper.

So, this week, my usual vlog was a whole lot more fun! It's mostly video clips and photos of our camping trip and the gorgeous natural world around us. There's a little bit at the end about the books I'm reading, too. Studies show that just looking at pictures of nature improves both physical and mental health, so I hope you enjoy coming along on our trip! You can watch the video on YouTube or here below:

Chronic Illness Vlog 10-31-22 & Happy Halloween!

Last week's vlog shows an honest view of my life with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), Lyme disease, and Orthostatic Intolerance (OI).

I am still--slowly--working my way back from this months-long relapse, but I am definitely seeing improvements. I actually went OUT last week--three times!--and enjoyed a fun weekend. That's a big step forward.

I'm still on the couch today and still achy, but I'm much more functional than I was a few weeks ago, when I was unable to even sit up briefly.

As always, you can watch the video on YouTube or I'll imbed it below.

However you watch, please take a moment to leave a comment and let me know: 

How was YOUR week?