GET (Exercise) Removed from UK M.E. NICE Guidelines!

Rejoice!! (cue sound of trumpets)

After years of work by patients, doctors, and advocacy groups, the UK's National Institute for Health and Care Excellence (NICE) Guidelines for M.E. have finally removed the harmful recommendation to force ME/CFS patients to exercise. Hurray!!

I haven't been posting here about every step of this arduous process because it's been a long and difficult one. But with much of the rest of the world acknowledging  a few years ago that the original studies that resulted in recommending Graded Exercise Therapy (GET) as a "treatment" for ME/CFS were seriously flawed and the advice debunked, I felt it was only a matter of time before the UK itself came to the same conclusion. It's been a long road, though. Briefly, NICE was ready to release the new guidelines (without exercise included) a couple of months ago and suddenly postponed its publication. Since then, they held stakeholder meetings, hearing from hundreds of ME/CFS patients, doctors, researchers, and advocates (and plenty of medical professionals supporting GET, as well). Thankfully, science won out in the long run.

Here are some highlights of the new guidelines. They:

• Acknowledge that exercise, and specifically Graded Exercise Therapy (GET), can make patients worse.
• Provide advice around energy management instead.
• Downgrade Cognitive Behavioral Therapy (CBT) from a curative "treatment" to a support management tool.
• Include specific recommendations for those with severe ME/CFS and for children and young people.
• Perhaps most stunningly, the document acknowledges the prejudice, disbelief, and stigma that patients have endured for too long.

You can read a more complete summary of the process and the changes in this article from #MEAction. 

From the summaries I have read, I can't tell if the new NICE guidelines actually include any real medical treatments, like treating Orthostatic Intolerance, correcting sleep dysfunction, treating underlying infections, or treating immune dysfunction. The #MEAction summary does note that the section on research leaves out a lot of the latest research on causes, underlying physiology, etc. so I suspect the guidelines do not provide much in the way of specific treatments.

However, ME/CFS patients in the UK will no longer be forced to exercise, and ME/CFS clinics there will be allowed to offer a broader range of services, support ... and hopefully real medical treatments, too. They will no longer be limited by the old NICE guidelines which only allowed GET and CBT.

The impact of this wonderful news is not only confined to the UK, either. Unfortunately, over the past decades, many countries, doctors, and hospitals (including some of the most prestigious medical centers in the U.S., like Mayo and the Cleveland Clinic) have followed the UK's guidelines, so hopefully, this will put a stop to that also. The U.S.'s Centers for Disease Control (CDC) removed recommendations of GET and CBT from its own website guidelines, soon after the data emerged that they were harmful.

This is great news! It came about thanks to the tireless work of many, many people in the UK and beyond who deserve our gratitude. Hopefully, this is the beginning of a huge change in treatment protocols for ME/CFS patients in the UK and beyond.

NOTE: When I refer to "real medical treatments," I'm including many of the treatments that have helped my sons and I to improve our functioning and quality of life and live more active lives again. Read more about these treatments in the tab on this blog, Effective Treatments for ME/CFS.

And for more detailed guidelines on testing and treatments to share with your own doctors, refer to the documents from the U.S. ME/CFS Clinician Coalition, linked to in this post on New ME/CFS Testing and Treatment Guidelines.

TV Tuesday: Only Murders in the Building

Way back in my Summer TV Preview at the start of July, I mentioned a new show I was really looking forward to, even though it wasn't due to start until the end of summer. Only Murders in the Building has a cast of comedy gold, so I had high expectations ... and they were exceeded! My husband and I both enjoyed this murder mystery-comedy-drama and were disappointed when it ended.

In New York, there's a fancy apartment building called The Arconia, whose residents include celebrities and other successful people (to varying degrees). Typically, its residents keep to themselves, but now someone in their building has died, under suspicious circumstances. At first, police determine that Tim Kono's death was a suicide, but it's not that clear-cut. The building is cleared while the police investigate, and three very different residents end up waiting in the same neighborhood restaurant together. They discover that all three of them are serious fans of a particular true-crime podcast, and they end up discussing the ins and outs of that case in depth. Charles, played by Steve Martin, is a somewhat stiff and pompous guy who used to be an actor. In his best-known role, he played a detective on a cop show for years. He vaguely knows his neighbor, Oliver (played by Martin Short), who works as a director of plays in New York. Before the death in their building and their meeting in the restaurant, neither of them knew Mable, played by Selena Gomez, but the three of them quickly bond over their love of the true crime podcast. When they return to the building and begin to find clues suggesting that Tim's death might not have been suicide, they decide to start their own true-crime podcast, Only Murders in the Building, investigating on their own and reporting to their followers. Detective work, suspense, and hijinks ensue!

A TV concept created by Steve Martin and starring himself and Martin Short? With Selena Gomez as their young, much cooler partner? I'm in! This unique show really has it all. It's a murder mystery with plenty of plot twists, surprises, and suspense. It's also very, very funny, with comedy royalty (and best friends) Steve Martin and Martin Short at the helm, with great chemistry with their co-star Selena. And surprisingly, it is also warm and touching, as the three loners begin to get to know each other, eventually reveal their secrets, and develop a real friendship. Other big stars like Nathan Lane appear in the story, too, much to our delight. We just loved everything about this show and enjoyed every episode. Our only complaint? It was over much too soon! But good news: season two is scheduled for release in 2022. We can't wait to see what happens next.

Only Murders in the Building is a Hulu original, so it is available exclusively on Hulu.

 

Top Ten Posts from the Past Month

It's been another rollercoaster week of highs and lows - whew. After a month-long crash, I finally had a few good days earlier this week! Aches gone and able to be active just in time for our 2-day camping trip. You can see photo and video highlights on my Fall Getaway video. But, yesterday, I hit bottom again - horrible aches and sore throat, out of the blue. Even worse this morning--had to cancel going to see Hamilton with my two closest friends (who I haven't seen in months!). Pretty bummed out but settled into a rest day on the couch.

Since I don't have the energy for a new post today, I thought I'd share the 10 past blog posts that got the most visits this past month. It's a mixture of older, popular treatment posts plus inspirational posts plus recent updates (and one head-scratcher!). My top 10 blog posts this past month:

• Opinions and Editorials on the New Name & Criteria - this is a post from 2015 that is not very relevant anymore, so I have no idea why so many people looked at it this past month! If you're interested in some history, this post describes the "new" name, SEID, for ME/CFS, which never really caught on.
• News from Our House: Ups and Downs - this recent post from last month describes more of my recent rollercoaster struggles with recurring relapses, and what helped, as well as my son's wonderful improvements.
• Heart Rate and Post-Exertional Crashes in ME/CFS - this perennial favorite post, written in 2011 and just updated last year, is all about how heart rate can help you to predict (and prevent) post-exertional crashes, including how to calculate your limits and tips on choosing the right heart rate monitor.
• Treating Yeast Overgrowth/Candida - another popular older post that gets a lot of attention because yeast overgrowth is very common in ME/CFS and related illnesses due to our immune dysfunction--and it can make you feel awful, so treating it often improves many symptoms!
• The October Slide: ME/CFS and Infectious Triggers - popular at this time of year for obvious reasons, this post explains how the immune dysfunction of ME/CFS makes us susceptible to infectious triggers and how to prevent the downward slide that is common in fall and winter.
• Imunovir and Inosine for Treating ME/CFS - closely linked to that last post, inosine helps to normalize the immune system and has had a huge positive impact on my son and I--inexpensive and readily available, it's one of the top treatments that has helped us over the years.
• Increasing Glutathione in ME/CFS and Related Illnesses - again, closely linked to those last two posts, glutathione is essential for energy, detox, and ... healthy immune function. It's another simple, inexpensive treatment that has greatly improved our ability to function and reduced crashes & infections.
• Immune System Abnormalities in ME/CFS - another post that is part of this grouping on treating immune dysfunction, read this one first to better understand how the immune system in ME/CFS is dysfunctional.
• Mast Cell Activation Syndrome (MCAS) and ME/CFS - a different avenue of treatment to consider for ME/CFS and related illnesses, like Lyme disease, POTS, EDS, and fibro. MCAS is very common in these illnesses and is often easy to treat with inexpensive and readily available treatments.
• Weekly Inspiration: A Day in My Life - I made this video to show what a typical day is like in my life with ME/CFS and Lyme. I made it on a day when I was doing pretty well, which was most days until last year when this series of relapses began. I tried to be honest and open and share the realities of my life with chronic illness, including how treatments have helped me.
  

Those were the 10 blog posts most visited here in the past month, so I hope those keep you busy while I work on recovering! 

As always, please share your thoughts and your own experiences in the comments or any questions you might have.

Weekly Inspiration: Rejuvenating Time Outdoors

Hi, all! The blog has been quiet this week because my laptop is at Apple being repaired - AGAIN! For the second time in a year and a half, the display/screen died. Apple products are normally pretty reliable, but I think I got a lemon this time!

So, I am limping along on a 15-year-old MacBook (which, by the way, is still in excellent shape!), using ancient browser software that won't even let me access the YouTube site! So, I am limited, to say the least.

The timing is good, though, because we are heading out today for a much-needed break, a short camping trip to a local park. That means being off-grid for me anyway! And hopefully, when I return, there'll be a message from Apple telling me by laptop is ready to be picked up.

In the meantime, with limited resources (and time), I will share some posts I've previously published on the topic that is foremost in my mind today: spending rejuvenating time outdoors. I wrote exactly what I am thinking about today in this Weekly Inspiration post about a year ago, Outdoor Living. In fact, we had just returned from camping at this same park and in the exact same site we will be on this week! So check out the post, loaded with helpful tips and gorgeous outdoor photos (just looking at photos of nature has been proven to provide mental and physical health benefits!).

Our favorite water-view campsite!

 

The scientific studies proving that are explained in my article, The Restorative Power of Nature, which is reprinted in full in the linked post. That article also includes ideas on how you can enjoy nature, even if you are homebound or bedridden!

I also made a video on the Health Benefits of Spending Time Outdoors, but as I said, I can't access YouTube right now to give you a direct link or include the video here. If you are interested, you can visit my YouTube channel, click on Playlists and then the Chronic Illness Playlist, and you'll find all of my chronic illness videos, including Get Out! about how to spend time outdoors or benefit from nature, regardless of your limitations.

 

So, we're packing up the camper and heading out after my nap! I hope you find a way to enjoy the benefits of nature this week, too!

Weekly Inspiration: A Day in My Life

I finally finished editing and uploaded my own Day in the Life with Chronic Illness video, showing you a glimpse into my life with ME/CFS, Lyme disease, and OI (POTS and NMH).

As I mentioned in a recent Weekly Inspiration post, I enjoy watching chronic illness "slice of life" videos on YouTube. These are the videos that provide a glimpse into someone else's life with chronic illness. Some are Day in the Life videos, capturing a single day, and others, like the Chronically Jenni Weekly Vlogs I highlighted in that earlier post, cover more time.

What I find interesting and inspirational about these kinds of videos is their honesty and authenticity. As opposed to what you normally find online and on social media, these chronic illness videos almost always show the unvarnished truth, in this case about what life with chronic illness is like: the good, the bad, and the ugly. I find it comforting to see someone else do something small, like meet a friend for lunch or go to a store, and then have to lie on the couch afterward--I feel bad for them, but it means I'm not alone! There's comfort in community, in knowing that others face similar challenges as you do ... and are managing their own version of life and happiness.

So, for all of these reasons, I recorded my own Day in the Life with Chronic Illness video. You can watch it on YouTube at the link (and be sure to "Like" and leave a comment, if you want), and check out the Notes below the video on YouTube. And I will also embed the video here:

As I explain in the introduction to this video, I recorded it on a day when my husband was out of town (a rarity these days!) but otherwise, it was a pretty typical day for me. I wasn't crashed, and I was able to manage small bits of activity, with periods of rest in between. I tried to include everything in my daily routine, to give you a glimpse into my life with ME/CFS, Lyme, and OI (POTS and NMH) and the many kinds of self-care that help me. Since I enjoy the honesty and authenticity of others' videos, I tried to give you the same thing here ( I even started recording when I first woke up!).

Finally, as I mention in the video and in the notes below it, I am only able to manage the level of activity and functioning shown in the video because of the treatments I have found over the past 19 years that have helped both me and my son to feel better, tolerate more exertion, normalize our immune systems, prevent and lessen crashes (flare-ups), and overall improve our quality of life. For more information on Effective Treatments for ME/CFS (most of which are readily available worldwide and inexpensive), click on that link to the page here on my blog and/or check out the Notes below the video on YouTube.

 

And I would love to hear about YOUR life! What is similar or different than mine? What things help you to manage life with chronic illness?

Tell me about your own daily life in the comments below.

TV Tuesday: Big Sky

I love fall! Besides the perfect, cooler weather after summer's high heat and humidity and the beautiful colors of fall, lots of our favorite TV shows are back with new seasons! One of the shows we have most looked forward to, Big Sky, has just returned with its 2nd season. This mystery/thriller just gets more and more twisty, with surprises in every episode! To avoid any spoilers, I will just focus on the beginning of season 1 in my description.

As the title suggests, Big Sky is set against the gorgeous natural backdrop of Montana's mountains, forests, and rivers, but what's happening here is neither pretty nor natural. Two women and best friends, Cassie (played by Kylie Bunbury) and Jenny (played by Katheryn Winnick), run their own private investigator business in Helena, MT. Jenny is married to Cody, played by Ryan Phillipe (a local Delaware native!), and they have a teen son named Justin, played by Gage Marsh. In the first episode, Justin is waiting for his girlfriend and her sister to drive in from out of town for a visit. The two sisters, Danielle (played by Natalie Alyn Lind) and Grace (played by Jade Pettyjohn) are shown in their car, singing along to music and enjoying their road trip. Then disaster strikes as the two young girls are abducted on a deserted highway. Justin alerts his parents that they never showed up and aren't answering their phones, and soon both the police and Jenny, Cody, and Cassie are searching for the girls and investigating. Montana State Trooper Rick Legarski, played by John Carroll Lynch, is brought in to help with the search, but he doesn't seem worried and explains that lots of young women go missing from this area all the time. Soon, another young woman, Jerrie (played by Jesse James Keitel), is kidnapped from a truck stop by a creepy guy named Ronald, played by Brian Geraghty. And the twisty tale is off!

This is a tense and suspenseful story, with plenty of surprises you will never see coming. The acting is all top-notch from this ensemble cast, and the writing is excellent. The plot is classic thriller, with plenty of action and suspense in every episode. We have just started the newly begun second season, and I couldn't tell you anything about it without giving away all kinds of spoilers from season 1--a lot happens in every single episode, to keep you guessing (and watching). Oh, and it's got a great soundtrack behind the action, too! We've been waiting for this new season to come back, and this compelling, gripping show has already shocked us and taken us by surprise, in the first episode of season two. This is one of our favorites these days, in part because it doesn't fit the typical mold. Highly recommended for mystery/action/thriller fans.

Big Sky is currently airing on ABC on Thursday nights or you can catch it On Demand or streaming on Hulu.