Improvements to the US NIH's Involvement with ME/CFS

The U.S. government has a long history of ignoring and minimizing the needs of ME/CFS patients. Our National Institutes of Health (NIH), the primary medical research organization in the country, has for many years allocated a measly $5 million to ME/CFS research annually, which is nothing compared to other diseases with similarities to ours (see below), especially when you consider the numbers of patients.

In addition, although we have an Advisory Committee within HHS (Health & Human Services, the parent group to NIH), the CFS Advisory Committee or CFSAC, with some excellent, high-profile ME/CFS researchers and clinicians, nothing ever seems to come from their recommendations to HHS. It seems like no one has been listening.

So many patients have given up on the government and are bitter and resentful (with good reason!). But we really can't afford to give up because the NIH remains the top medical research resource in the US, in terms of both money and power. If we ever hope to get ME/CFS understood and taken seriously by the mainstream medical community, with real treatment options widely available, then we need NIH behind us.

Finally, there are some reasons for cautious optimism, some recent changes that give us hope for a better future:

• After the IOM Report in 2015, the Solve ME/CFS Initiative organized a congressional briefing, attended by congressional representatives, reporters, government officials, and 300 live webcast viewers.
• In 2015, a nationwide working group was formed, headed by Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association, to collaborate on policy changes in government. This working group also joined with the newly formed #MEAction initiative. In December 2015, this large working group issued a joint statement cosigned by 23 organizations and advocates.
• In February 2016, that new coalition put their words into action in both meetings and letters to congressional members to save our measly $5 million in NIH funding, which was completely missing from the proposed NIH budget. This was critical, since without a line item in the NIH budget, it would have been very difficult to get ME/CFS back into it in future years
• In August 2016, a group of ME/CFS advocates met with Karen DeSalvo, the acting assistant secretary for health - the highest-ranking meeting with HHS officials in recent history. A second meeting will take place in October 2016.

(These news items all come from the Solve ME/CFS Initiative's Chronicle newsletter, which was involved in all of these actions. You can sign up for an e-newsletter or their paper newsletter to read more here.)

 And just this month, the charter for CFSAC was renewed with some significant changes:

• The charter includes a new responsibility for the committee to include "strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research." This will help patients' voices to be heard and acted on.
• Another new item in the revised charter: "The Assistant to the Secretary of Health shall be given the responsibility to coordinate and monitor the implementation of those recommendations adopted by the Secretary." This is significant since the CFSAC's recommendations have gone nowhere in the past - now, someone is responsible.
• Voting members of CFSAC have been increased from 11 to 13, including 3 who are ME/CFS patients or caregivers (up from 1 previously).
• Two non-HHS members have been added to the ex-officio list of members: representatives from the Department of Defense and the Department of Veteran Affairs. This is significant because there is considerable overlap between Gulf War Syndrome and ME/CFS, and the DOD funds a lot of its own biomedical research and has access to a LOT of funds.

(This is just a quick summary. For more details on the CFSAC changes, please refer to Jennie Spotila's informative post on her blog Occupy ME.)

So, while the government is infamous for moving at a snail's pace and being non-responsive, these are all positive changes that could result in significant changes for ME/CFS patients in the future. We are moving in the right direction!

TV Tuesday: Freaks and Geeks

I was looking for a new show to watch on those rare occasions when I have some time to myself (very rare lately - both college sons have come home sick a lot!). I decided to finally try a 1999 show that I have heard rave reviews of from so many people: the one-season wonder Freaks and Geeks.

Why did I wait so long to watch this amazing show?? I absolutely love it!

Freaks and Geeks takes place in a Midwestern high school in 1980. It features loads of teen actors and actresses who went on to become big stars as adults. And it perfectly captures high school in 1980. I should know - I was there!

It's definitely an ensemble cast, but one of the main characters is Lindsay, played by Linda Cardellini (who was on ER, played Velma on the live-action Scooby Doo, and much more). Lindsay is really smart, but she's sick of being an outcast at school and definitely does not want to be a mathlete any more. She starts wearing her dad's old Army jacket every day and hanging out with a rougher crowd, known in her school as the freaks. Her new crowd includes cute guy Dan, played by a young James Franco, nice guy Nick, played by Jason Segel (of How I Met Your Mother fame & many movies), and tough girl Kim, played by Busy Philipps (another ER alum who also starred in Cougartown). Seth Rogan as Ken rounds out their group.

In the same school, Lindsay's little brother, Sam, played by John Francis Daley (as an adult, one of our favorites as Dr. Sweets on Bones), is a freshman and hangs out with his best friends, Neal, played by Samm Levine, and Bill, played by Martin Starr. Unfortunately, the three are referred to as geeks by their classmates. They get picked on a lot and strive to find a way to fit in (while also still loving the things that make them geeks). This was 1980 - long before being a geek was cool.

The action mostly takes place in and around school, with the two main groups at the center of things but with lots of supporting roles. Two of the very few adults in the show are Lindsay and Sam's parents, played perfectly by Becky Ann Baker and Joe Flaherty. The show deals with all of the typical high school issues among the main characters: bullying, crushes, trying to fit in, figuring out who you are, and peer pressure.

What's unique here is how well it's all done. As you can see from their later resumes, the actors and actresses, though only teens at the time in most cases, were first-rate. The writing is excellent, and the sets are absolutely perfect. You know how Glee was always over-the-top and kind of campy (among its charms, for sure)? Well, Freaks and Geeks is super-realistic. In fact, this was MY high school (and I was very much like Lindsay!). Seriously - they pegged it perfectly, every last detail. I hate when TV shows or movies set in the 80's feature crazy clothing styles - all the girls dressed like Madonna or everyone in neon. This show is exactly what it was really like in high school in the 80's. I keep seeing Lindsay or another character wearing clothes that I had, shirts that my classmates wore - they have recreated 1980.

They also perfectly recreated the atmosphere in school. There's the long-haired guidance counselor who wants to be "your friend" and thinks he is cool (and is anything but). The burly gym teacher enthusiastically announcing "a day off for something fun," and then starting a dodgeball game, with the smaller kids cowering against the wall while the tough guys belt them with red playground balls (yeah, I'm just 5'1" now - guess where I was in those terrifying dodgeball games?). The school dance in the gym with everyone looking awkward and nervous. No glamorous micro dresses and 5" heels back then!

So, what if you didn't go to school in the early 80's? You will still love this show. It's wonderfully executed, dealing with real topics but with a sense of humor (Judd Apatow was Executive Producer). My 22-year old son enjoys it. And it is so much fun to see these now-famous actors and actresses as unknown kids! In fact, it won an Emmy for Outstanding Casting in a Comedy Series in 2000. You can see the long list of other awards and nominations it racked up in its single season.

I'm sure you can tell by my gushing descriptions that I am absolutely loving this show. I've only watched 4 episodes so far and am already dreading the end! Freaks and Geeks was famously cancelled after just one season, originally, just 10 episodes, but 18 had been made, and fans screamed loud and long to get the other 8 on air.

You can now watch all 18 episodes of Freaks and Geeks on Netflix. It is available through Amazon on DVD only.

TV Tuesday: Love

Back in the spring, I spent my lunchtimes (my "me" time!) watching a Netflix series called Love. I wasn't sure how much I liked it as first, but it grew on me, and I ended up enjoying the 10-episode first season. Love is basically a romantic comedy set in L.A., but it breaks from convention in every way possible.

In the very first episode, we meet Gus (played by Paul Rust), a nerdy but nice guy - maybe in his 30's? - who seems to have a very dull relationship with an overbearing girlfriend named Natalie. That doesn't last long, though, as Gus soon finds out that Natalie cheated on him and leaves her. Gus is at loose ends and seriously lacking in self-confidence. He works as an on-set math tutor for a spoiled child star on a corny TV show about witches in suburbia. He dreams of becoming a screenwriter and writing a script for the show himself.

In that first episode, Gus meets Mickey (played by Gillian Jacobs) at a convenience store, when Mickey realizes she forgot her wallet at home, and Gus offers to pay for her coffee and cigarettes. Mickey is Gus' opposite in every way - brash and outspoken, constantly swearing, and reckless. However, she is also in-between relationships (her drug-addicted on-again, off-again boyfriend has recently joined a cult) and feeling like her life is stalled. Mickey works as program manager at a satellite radio station, where her boss keeps flirting with her. In the second episode, Mickey finds a roommate to share her house: perky, sweet British Bertie (played adorably by Claudia O'Doherty).

Little by little, Gus and Mickey get to know each other and sort of - kind of - begin to date. This is not your typical romcom with a predictable chronology but a rocky, realistic story where neither of the main characters is quite sure where things are going. Sometimes, they seem to get along well and sometimes it seems like there is no way they will end up together.

The show was created by Judd Apatow, and although I'm not all that familiar with his work (Knocked Up, This is 40), from what I have heard, this show perfectly fits his typical style. It's somewhere between a drama and a comedy - it has plenty of amusing moments, but it is certainly not a sitcom. The characters really grew on me. I didn't like Mickey much at first - she is abrasive and often self-destructive. And I just wanted to shake Gus at times and tell him to stand up for himself. But over the course of the 10 episodes, as I got to know them, I liked them both more and more and was rooting for them to get their lives together. Of course, that hasn't happened yet, but I am looking forward to season 2.

Love is a Netflix original series so it is available exclusively on Netflix.

This trailer will give you a good idea of the tone and "feel" of the show:

Movie Monday: American Ultra

A few weeks ago, my husband and I had a rare weekend evening to ourselves, so we chose a movie - big occasion! We watched - and enjoyed - American Ultra, an action-filled movie with plenty of humor.

As the movie opens, Mike, played by Jesse Eisenberg, is living with his girlfriend, Phoebe, played by Kristen Stewart. Mike is clearly a stoner, working at the local convenience store in their small West Virginia town and getting stoned in his spare time (and sometimes at work, too). He seems to have some issues with anxiety, but Phoebe is supportive and Mike wants to ask her to marry him.

Their quiet, limited life changes in an instant when a woman comes into the convenience store where Mike is working and says some strange words to him. They make no sense to him (possibly because he is high again), and she leaves. Moments later, Mike goes out to the parking lot and sees two men planting a bomb under his car. They attack him, and his stoned lethargy drops in an instant as he easily kills both of them. He is left stunned, having no idea how he did that or what just happened.

It turns out (this is still early in the movie so no spoiler) that Mike is a sleeper agent for the CIA who has just been activated. Mayhem and hilarity ensue as two different factions race to get to Mike first, some of them bent on destroying him. Mike's CIA training is in conflict with his normal anxiety-ridden, stoned demeanor, as skills he didn't know he had kick into play.

This movie is just plain fun. The two lead actors (who were also together as a couple n Adventureland - a great movie) work very well together, and the supporting cast is very good, including Topher Grace and John Leguizamo. There are all kinds of secrets and surprises in store, both for the characters and for the viewers, so there is plenty of suspense to keep things moving. This is an action-packed movie which is not always my favorite thing, but in this case, it is paired beautifully with humor. So, yes, there is a LOT of gunfire, things blowing up, and other violent stuff here but set against Mike's typically chilled demeanor, there are also plenty of laughs and some warm moments, too. My husband and I both enjoyed this unique and fun rollercoaster ride of a movie.

We watched American Ultra on Amazon Prime, where it is currently free. It is also available on Netflix DVD (but not streaming). And it is on DVD.

The trailer kind of gives away a lot of the movie's best moments...but it is pretty funny, if you want to check it out: