Wednesday, July 21, 2021

ME/CFS State of the Science: Perfect for Sharing with Doctors!


[NOTE: Please take a moment to endorse me! I've been nominated for 4 WEGO Health Awards.]

In June, two top ME/CFS researchers and doctors, Dr. Ian Lipkin (renowned Infectious Disease researcher) and Dr. Anthony Komaroff (long-time ME/CFS clinician) published an excellent and much-needed article in the the medical journal Trends in Molecular Medicine on Insights from myalgic encephalomyelitis/chronic fatigue syndrome may help unravel the pathogenesis of postacute COVID-19 syndrome. The journal article covers the state of ME/CFS research at this time when "long COVID" (which is often ME/CFS) is rapidly increasing our numbers. It also addresses how the research and science of each condition can help the other.

You can read an excellent, easy-to-understand summary of the journal article, ME/CFS Research: State of the Art, State of the Science, here at the link at ME/CFS Center for Solutions' (at Columbia University) website. That summary article includes a link to the journal article.

This summary article, with the link to more detailed scientific references, is a perfect brief document to print and share with doctors and other medical professionals who either want to know more about ME/CFS or who clearly have misconceptions about the scientific basis for the disease. I've printed copies of both for our functional medicine specialist, a brilliant RN who knew nothing about ME/CFS before my son became her patient but is eager to learn.

Another excellent source of information for doctors that I've mentioned here before is the website for the U.S. ME/CFS Clinician Coalition. This is a group of about 20 of the top ME/CFS experts in the nation who've been treating patients with ME/CFS for years (sometimes, decades). On this website, they have compiled their vast knowledge and experience to help other doctors, with a huge array of resources they either reference or have written. These include official reports on ME/CFS, as well as their own guidance on diagnosing and treating the disease. This does not include debunked "treatments" like CBT and GET but a long list of real medical treatments that they have used for their own patients that any doctor can try.

So, if you have a doctor who doesn't understand ME/CFS, doesn't "believe in" ME/CFS, or is compassionate but thinks there are no treatments available, start sharing some of these excellent resources with him or her today! (And if you're doctor isn't interested in learning, find a new one).

This kind of broad communication of the latest in ME/CFS research is exactly what we need to begin bringing the medical community up to speed on the scientific basis of ME/CFS and how to treat it.


Thursday, July 15, 2021

Nominated for Awards - Please Endorse Me!


Hi, all!

Just a quick stop by the blog to share some wonderful news with you:

I've been nominated in the 10th Annual WEGO Health Awards for a Healthcare Collaborator award! This is in recognition of my 14 years of work in writing this blog, sharing information on social media, starting and participating in support groups, and advocacy efforts.

It's my 3rd nomination for a WEGO Health award in the last 10 years, and I am honored.

Now I need your help to become a finalist!

Just take a moment to endorse me at this link. The website is a bit wonky and not all that clear, but just click on Endorse This Patient Leader, under the award name. A box will pop up saying "Healthcare Collaborator" that looks grayed out, but just click on it to endorse me. Super easy and only takes a few moments.

Thank you for your endorsement ... and for many years of interacting on the blog, on social media, and in real life to help build a supportive patient community for all of us!

UPDATE ON JULY 17: Wow, I have now been nominated for 4 WEGO Health awards:

  • Healthcare Collaborator
  • Patient Leader Hero
  • Best in Show: Blog
  • Advocating for Another
I am honored and very touched by the endorsements and comments left by people. Thank you for your support. If you already endorsed me, thank you and please consider clicking the link again to endorse me for the other 3 awards, and if you haven't visited the WEGO awards yet, please consider endorsing me for whichever awards you like, if you have gained any value from my work on this blog, in groups, on social media, and in advocacy. THANK YOU!!

Monday, July 12, 2021

Movie Monday: A Quiet Place Part II

We celebrated a BIG event last Thursday: we went to see a movie IN A THEATER! Yes! It felt like an extraordinary, thrilling experience. And we chose a great movie to welcome us back to the theater: A Quiet Place Part II, which is perfect for the big screen. First, if you have not yet seen the first movie, A Quiet Place, check out my review at the link. It is a wholly original, genre-busting movie that defies categorization and is outstanding by any measure (and probably not what you think). Here's a quick review, with no spoilers (even if you haven't seen the first movie yet), of the sequel:

A Quiet Place Part II picks up right where the first movie ended, literally moments later, though first, it takes a look back at how all of this began. It starts with Day 1, the day when normal life suddenly shifted to this strange, terrifying, necessarily-silent world. John Krasinski is the dad; his wife, Emily Blunt, is the mom; and they are at their son's (Marcus, played by Noah Jupe) baseball game. It's a typical small-town Saturday scene, with dad bringing oranges for the players and mom encouraging her son through his case of nerves when he's up at bat. Big sister Regan, played by Millicent Simmonds, is deaf and is in the stands, watching her older brother and helping to keep an eye on her younger brother. A local friend, Emmett (played by Cillian Murphy) is sitting next to them, cheering on his own son and joking with Regan and her dad. Then, the world as they know it comes to an abrupt halt, as some sort of fireball falls from the sky and lands nearby. Hysteria ensues, followed quickly by terror, as the townspeople catch the first sight of the gruesome alien creatures. Then, the story jumps to the moments after the first movie ended. The family must leave their home, which has become their safe haven over the past year-plus. That pregnant belly mom was sporting in the first movie is now a young baby, adding to the family's danger, though they have taken extraordinary steps to keep the baby quiet. As in the first movie, it is essential to stay completely silent because these aliens hunt by sound, but they must leave and go in search of a new place to live. They leave with just a pack or two each, carrying the baby in a sound-proofed "cradle" between them, looking for safety. They eventually find Emmett, far from town, though he's not eager to add this potentially noisy group to his own safe place. Danger, excitement, and a quest for a better life ensue.

This sequel was excellent, though a little bit more in the sci fi horror category. The focus is still very much on the family dynamics and their love for each other, but this movie had far more scenes with the aliens and far more jump-scares! At one point I jumped so hard, I hit my elbow against the armrest. The quiet is still an essential feature here, though it is not as quiet a movie as that ground-breaking first one, but the sound design is still very creative and unique here. It still feels dangerous to munch on your popcorn during the quiet scenes! Millicent Simmonds as Regan is still absolutely outstanding in her role, and she has an even larger role in this movie, though Noah Jupe, playing her brother, gets a bigger role here, too, and is excellent. It's a wholly unique story, produced and filmed in an original way, showcasing a family's love for each other in the midst of a terrifying post-apocalyptic situation.

A Quiet Place II is currently available only in theaters, but it will soon be coming to streaming services, Redbox, etc.

Wednesday, July 07, 2021

To All Who Receive My Posts Via E-Mail



I was recently forced to change e-mail list providers because the old one, Feedburner, went away as of July. This means you are seeing some changes if you subscribe to my blog posts by e-mail.

I struggled to find a provider to meet my needs, who can continue to provide the e-mail service you are used to, and I am still struggling to work out some issues. 

I finally settled on follow.it, which is a feed-reader (much like Reddit, I think). Your e-mails from this blog will now show follow.it as the sender - these are not spam but the same e-mail list you've been signed up for in the past (unless you are a new subscriber - then, thanks!). The subject line will say Your Newspaper, 8th of July (or whatever the current date is).

If you have been receiving my blog posts by e-mail and want to continue, your e-mail should have been automatically imported to the new service. However, I am hearing of some issues with that, so a few points to be aware of:

  • If you used to receive my blog posts via e-mail and no longer do, just sign up again, using the box at the top of the sidebar "Get new posts by e-mail."
  • Whether you sign up now as a new subscriber or your e-mail was imported from the old list, you may be asked to confirm you want to stay on the list. I've heard this confirmation e-mail is confusing, and I've reported that to the company. Just be sure to click to confirm you want to stay on the list.
  • When you confirm you want to stay on the list, follow.it will also ask if you want to follow other feeds they host (including other blogs, news, entertainment, health sites, etc.). You do not have to follow any other feeds in order to continue receiving e-mails from this blog. Just click "unfollow" or don't select any new ones.

I apologize for the confusion. Believe me, I share your frustration! I've been wrestling with this issue for over a month now. But I think we are just about there. To summarize:

From now on, your e-mail updates from this blog will show follow.it as the sender.

You MUST confirm you want to stay on the e-mail list when prompted to do so.

You don't have to sign up for any other feeds with follow.it.

If you want to subscribe to this blog, to receive the posts in your e-mail inbox, just sign up using the box at the top of the sidebar "Get new posts by e-mail."

Thanks for your patience - I can't wait for this to all be sorted out and running smoothly!

Tuesday, July 06, 2021

TV Tuesday: Summer Shows 2021


Summer used to be a dead time for TV, with nothing on but reruns while we waited for the new fall TV season. Things have changed, though, and with all the competing streaming services, cable channels, and even the stodgy old networks bringing out new seasons and new shows at all times of the year, there is plenty to watch in the dog days of summer. My husband and I are enjoying a bunch of new seasons from some old favorite TV series, some new-to-us shows, and are looking forward to trying some new shows later this summer, too. (Links below go to my reviews--including trailers--where available.)

Returning Favorites

The good news? Our all-time favorite show is back for some extra end-of-season episodes. The bad news? These will be the last episodes ever. Good Girls, a hilarious, moving, thrilling series on NBC about three moms who get pulled into a life of crime, is back for an extra four episodes, but the powers that be have decided that this fourth season will be its last. This show is so well-done, starring Christina Hendricks, Retta, and Mae Whitman as the title moms and Manny Montana as the hot but dangerous crime boss. We just watched the second-to-last episode last night and can't even begin to imagine how they'll wrap it up when the last episode airs on July 8. 
Another favorite of ours is back for its third season. In the Dark on CW (earlier seasons on Netflix) is another story of regular people getting pulled into hard crime, but in this case, it's a blind woman named Murphy, her best friend, Jess, who's a veterinarian, and their co-worker, Felix. In the first episode, Murphy "witnesses" the murder of a good friend, a teen boy killed by drug dealers. Even though Murphy is blind, she knows enough to help the police and is determined to help bring her friend's killers to justice. But, this is a twisty tale, and between criminals, good cops, crooked cops, and deals gone wrong, the three young people, who all work at Murphy's parents' guide dog charity, soon find themselves into the criminal world way too deep. It's an excellent show, a dark thriller but with a great sense of humor, and we are excited to hear it will be back for a fourth season in 2022.

I finally finished reading the last book in the Mr. Mercedes trilogy by Stephen King (including Mr. Mercedes, Finders Keepers, and End of Watch), so now we can finish watching seasons two and three of the Mr. Mercedes TV show on Peacock. Luckily, someone warned me that the TV show swaps things around, with season two covering book three and season three tackling book two, so I knew to finish the whole trilogy before going past season one. I have made the mistake of starting season two of the show immediately after finishing End of Watch, so I am a little annoyed by all the changes they made: killing off beloved characters, adding entirely new characters, shifting the plot, and even changing the seasonal setting. But, all that said, it is still an excellent TV series and very well-done, a detective/thriller show with some paranormal elements. If Stephen King can accept all these changes to his books, I guess I can, too.
Another show we enjoy based on a book series is Bosch on Amazon Prime, adapted from the huge series of books by Michael Connelly about Detective Harry Bosch. We both love Connelly's novels and the Bosch character, and the TV series is an outstanding adaptation. Each season is generally adapted from a single novel, and the cast is excellent, headed up by Tutus Welliver as Bosch and Jamie Hector as his partner, Jerry Edgar. Lance Reddick co-stars as the Chief of Police. This is a classic police procedural, set in L.A., but of the highest quality. We were very sorry to hear this seventh season is its last, but word is that a spin-off is coming ... hopefully based on Connelly's newest character, Detective Rene Ballard.
For All Mankind is an entirely different kind of show on Apple TV. No crime or thrillers here. It is an alternate history of the U.S. space program, in a world where the Soviets first beat us to the moon in 1969 and then quickly sent the first woman to the moon, completely changing the U.S.'s own progression in the space race. In this world, which includes some real-life members of NASA and historical news excerpts, as well as some fictional characters, the race to the moon is accelerated by the Soviet's accomplishments, women become an integral part of the space program early on, and a base is established on the moon to keep the Soviets (who have their own base) from taking over. We are now watching season two, which takes place in the 80's, after the U.S. moon base has grown tremendously and lithium has been discovered on the moon. Can you imagine the implications? The show is outstanding, suspenseful and thoughtful, with excellent cast and writing. It's a fascinating look at an alternate history and science progression but also a drama about the lives of the astronauts, their families, and the other employees of NASA. Highly recommended.

 Also on Apple TV, another favorite of ours has also returned for a second season: Home Before Dark (not to be confused with In the Dark, above). This is a typical mystery/crime show ... except that the detective is a nine-year-old girl! Hilde's family recently moved from Brooklyn to a tiny Northwest coastal town where her dad grew up. Hilde wants to be a journalist, just like her father, and already writes and publishes her own local paper. In season one, she somehow managed to solve a decades-old cold case involving a missing child who was one of her dad's best friends. In season two, she is investigating an environmental mystery. This is one of our favorite shows--it is smart and funny and totally engrossing, and we can't wait for each new episode to be released on Fridays.

To lighten things up from all these mysteries and thrillers, we are enjoying the newly released season five of The Good Fight, a spin-off of The Good Wife. Starring Christine Baranski and Audra McDonald, the show features a Chicago law firm that can't decide if it wants to be an all-Black firm or an all-woman firm (that's a big source of tension in this latest season). It is ripped-from-the-headlines , with this season set right now, past the worst of the pandemic and in the current political climate. There are legal cases in every episode and political references, but also a great sense of humor. Like I said, it;s a fun counter to some of the darker thrillers we watch.

 

 

New Shows We Might Try

There are several new shows slotted to start in August that we plan to try.

A reboot of Fantasy Island is set to premier on Fox on August 10. I heard about this show because I listen to a podcast, Happier in Hollywood, hosted by the two TV writers and show runners involved in the project, Liz Craft and Sarah Fain. After listening to how much fun they had filming the show in Puerto Rico this spring, I decided to give it a try. The trailer looks enticing:


And there's a new Sandra Oh TV series, The Chair, coming to Netflix on August 20! We loved her in Grey's Anatomy and on Killing Eve. Here, she stars as the Chair of a university English department. The trailer doesn't tell you much, though it hints at a good sense of humor ... and it's Sandra Oh! Definitely worth trying:


Coming to Hulu on August 31 is a new series, Only Murders in the Building, about three neighbors who investigate a murder in their apartment building. Get this: the three lead actors are Steve Martin (who created the show), Selena Gomez, and Martin Short! And I caught a glimpse of Nathan Lane in the trailer, too. Talk about comedy royalty! I can't wait to try this one:


How about you? What are you watching this summer? Any new shows coming that you want to see? We're always open to new suggestions!