A woman with severe ME has started a project to make a documentary about ME/CFS. They've already made a great start, but they need help! There are several ways that we can all help right from our beds and couches.
Check out their video:
Then you can donate to their Kickstarter fund - donations as low as $1 are accepted. Just think - if everyone with ME/CFS donated just $1, they'd end up with millions to make this important documentary!
You can also help by spreading the word. From their Kickstarter page, you can share on Facebook or Twitter or embed the video in a blog post as I've done here. You can also read more about the project on that [age.
They've already made a fabulous start to this important project - just think what they could do with proper funding!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Wednesday, October 23, 2013
Monday, October 21, 2013
Movie Monday 10/21
As most of you already know, I was badly crashed for much of last week, continuing a two-week bad cycle, but was starting to feel better by the weekend. Feeling pretty much back to my "old self" now - not my actual old self from 12 years ago, but my usual old self post-CFS. I even took a walk today around my neighborhood - it felt absolutely glorious to be out in the sunshine, moving!
We enjoyed a couple of good movies this weekend:
Friday night, we watched The Avengers with 15-year old Craig. Our older son saw it with college friends last year at the theater, but the rest of us missed it. It was very entertaining and helped to fill in the blanks from last week's viewing of Iron Man 3. You know all those superhero/Marvel comic movies that have come out in recent years? Well, The Avengers pulls them all together into a single storyline. A villain comes along who is too powerful for any one superhero to tackle alone, so all those various heroes come together (reluctantly) - Iron Man, Captain America, The Hulk, and Thor, along with former Russian spy The Black Widow. As you might imagine, that makes this an action-packed movie, with lots of suspense and fight scenes. But it also has a good sense of humor which we all enjoyed. At the end, I said it was good but the ending battle scene went on a bit too long...and my husband and son both said, "What?? It wasn't long enough!" It all depends on what you like. The star-studded cast makes this movie enjoyable for most, though - how can you go wrong with Robert Downey, Jr., Mark Ruffalo, and Chris Hemsworth (Thor) in one movie?
Watching The Avengers made us all curious about the new TV show, Agents of SHIELD, that just started last month. The premise is that it picks up right where the movie left off - after the battle of New York and the superheros fleeing off to wherever superheroes go. The agents of the title are on the lookout for others with superhero power so that they can protect them from those who would exploit them. So, we watched the first episode last night, and it's pretty good.
My son went to his Homecoming dance Saturday night, so my husband and I watched another movie, Star Trek Into Darkness. This is the second movie in the new Star Trek series, featuring Kirk, Spock, and the rest of the original crew when they were young and just starting out. Yes, another action-packed movie (that's life when you're the only female in the household!), but I enjoyed it. The Enterprise's crew heads out to deep space to go after a rogue Starfleet agent who has bombed headquarters. If you are a long-time Star Trek fan, like my husband (and me to a lesser extent), there are a lot of inside jokes here and connections to be made with stuff that happened later in the original TV series and the earlier movies. Entertaining, but I think I've seen enough explosions and fights to last me a while now.
Have you seen any good movies lately?
We enjoyed a couple of good movies this weekend:
Friday night, we watched The Avengers with 15-year old Craig. Our older son saw it with college friends last year at the theater, but the rest of us missed it. It was very entertaining and helped to fill in the blanks from last week's viewing of Iron Man 3. You know all those superhero/Marvel comic movies that have come out in recent years? Well, The Avengers pulls them all together into a single storyline. A villain comes along who is too powerful for any one superhero to tackle alone, so all those various heroes come together (reluctantly) - Iron Man, Captain America, The Hulk, and Thor, along with former Russian spy The Black Widow. As you might imagine, that makes this an action-packed movie, with lots of suspense and fight scenes. But it also has a good sense of humor which we all enjoyed. At the end, I said it was good but the ending battle scene went on a bit too long...and my husband and son both said, "What?? It wasn't long enough!" It all depends on what you like. The star-studded cast makes this movie enjoyable for most, though - how can you go wrong with Robert Downey, Jr., Mark Ruffalo, and Chris Hemsworth (Thor) in one movie?
Watching The Avengers made us all curious about the new TV show, Agents of SHIELD, that just started last month. The premise is that it picks up right where the movie left off - after the battle of New York and the superheros fleeing off to wherever superheroes go. The agents of the title are on the lookout for others with superhero power so that they can protect them from those who would exploit them. So, we watched the first episode last night, and it's pretty good.
My son went to his Homecoming dance Saturday night, so my husband and I watched another movie, Star Trek Into Darkness. This is the second movie in the new Star Trek series, featuring Kirk, Spock, and the rest of the original crew when they were young and just starting out. Yes, another action-packed movie (that's life when you're the only female in the household!), but I enjoyed it. The Enterprise's crew heads out to deep space to go after a rogue Starfleet agent who has bombed headquarters. If you are a long-time Star Trek fan, like my husband (and me to a lesser extent), there are a lot of inside jokes here and connections to be made with stuff that happened later in the original TV series and the earlier movies. Entertaining, but I think I've seen enough explosions and fights to last me a while now.
Have you seen any good movies lately?
In Search of Severely Ill, Bedridden ME/CFS Patients
I saw this announcement in the New Jersey CFS Association's newsletter:
Dr. Lapp is one of the top ME/CFS experts in the world, so this sounds like a fabulous opportunity for patients who can't normally get out to see any doctor, let alone one of the best in the world.
In addition, responding to this initial survey will help the CDC and IACFS/FM to understand how many of us are out there, unknown and uncounted. Privacy will be protected, as they only want initials and location as minimum information.
If you or someone you know is severely ill with ME/CFS, please contact Dr. Lapp at the above e-mail to at least get counted and maybe get some long overdone medical attention, too.
P.S. I checked with Dr. Lapp - this survey is international (though in the second stage, where they reach out to try to help those who are housebound, they may be limited to the US) - so everyone who has severe ME/CFS and/or is bedridden or housebound, please stand up...err...lie down and be counted!
"Dr. Lapp Seeking Severely ill/disabled patients
From: Hunter-Hopkins ME-Letter Sep 2013
Dr. Charles Lapp:
We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (cwlapp@drlapp.net) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!"
Dr. Lapp is one of the top ME/CFS experts in the world, so this sounds like a fabulous opportunity for patients who can't normally get out to see any doctor, let alone one of the best in the world.
In addition, responding to this initial survey will help the CDC and IACFS/FM to understand how many of us are out there, unknown and uncounted. Privacy will be protected, as they only want initials and location as minimum information.
If you or someone you know is severely ill with ME/CFS, please contact Dr. Lapp at the above e-mail to at least get counted and maybe get some long overdone medical attention, too.
P.S. I checked with Dr. Lapp - this survey is international (though in the second stage, where they reach out to try to help those who are housebound, they may be limited to the US) - so everyone who has severe ME/CFS and/or is bedridden or housebound, please stand up...err...lie down and be counted!
Sunday, October 20, 2013
Slowly Coming Back to Life
After a severe crash that lasted over two weeks, I am slowly coming back to life and returning to "normal," whatever that means for me! I was really getting frustrated this week, to still be feeling so awful and having to stay horizontal all the time. Last week, I had a good attitude about it - I could tell from the way it started that it would be a major crash, the sort that only hits me about once a year now - so I settled in to rest and wait for it to go away, resigned to spending a week on the couch. I even made a pre-emptive appointment with my doctor for Friday because I knew this type of crash with congestion always turns into bronchitis for me (I think when this happens it is triggered by exposure to a virus). I thought I was on top of things.
But this was more like a once-every-two-years crash! As one week passed by, then 10 days, I started to get impatient and frustrated. Last Saturday night, I missed out on one of our local CFS family gatherings that I always look forward to. We even had a family visiting from out of state, so I really wanted to be there. How pathetic is it when you're not well enough to go to a party for sick people??
So, I kept resting, and I did feel a little better last Sunday, after spending another Saturday on the couch. I expected Monday morning to be a fresh start, and I was ready to get back to work and be productive again. But I woke up Monday morning after 10 hours' sleep still feeling exhausted and achy all over, still congested and coughing.
I had one big thing planned for this week: my neighborhood book group's 125th book celebration Wednesday evening. We were meeting at a local restaurant to celebrate and have our book discussion...and I had made the arrangements and chose the next group of books to vote on. I did not want to miss it, so I tried to be good and listen to my body (something I'm not always good at) and rest aggressively (I love that term!). By Wednesday, though, I still felt awful. I stayed on the couch all day, took a longer nap than usual, and tried to avoid stress and exertion. Finally, at 5 pm, an hour before dinner started, I needed to make a decision. I went back and forth - yes or no? - and agonized over it. Finally, my son said, "Mom, what's the big deal? Just go and come home early if you need to." I realized he was right, and, completely fed up with missing out, I decided to go - I got dressed (in something other than sweats), even put on a little make-up, and I went! It felt like such a victory! And I did think I might be feeling better but wasn't sure I could trust my feelings.
The evening turned out great. I managed it fine, feeling better and better. I took of my shoes under the table and sat cross-legged on my chair to ward off OI. I also took Sudafed before I went - I was still congested but also figured it would be good for OI plus its stimulant effects wouldn't hurt! It was such a joy to be with other people and talk. I am normally a very social person - I was not meant to live an isolated life alone in my family room!
That turned out to be an OK decision. By pure dumb chance (and a lot of rest), I really did turn the corner that evening and started to slowly feel better. My stamina was still quite poor for the next few days even though I felt better, so I tried to take it easy and come back to "normal" life bit by bit. Yesterday, I managed a short walk with my husband at our local nature center - it was so wonderful to be outdoors and moving again!
Today is Sunday which is always a busy day for me - my older son comes home from college for a few hours, and I need to refill all our medications (12 weekly reminder boxes between the 3 of us!), plus I usually make his favorite pancakes for breakfast and a nice Sunday dinner. So, I am hoping not to overdo today so that Monday - this time - really will be a fresh start!
But this was more like a once-every-two-years crash! As one week passed by, then 10 days, I started to get impatient and frustrated. Last Saturday night, I missed out on one of our local CFS family gatherings that I always look forward to. We even had a family visiting from out of state, so I really wanted to be there. How pathetic is it when you're not well enough to go to a party for sick people??
So, I kept resting, and I did feel a little better last Sunday, after spending another Saturday on the couch. I expected Monday morning to be a fresh start, and I was ready to get back to work and be productive again. But I woke up Monday morning after 10 hours' sleep still feeling exhausted and achy all over, still congested and coughing.
I had one big thing planned for this week: my neighborhood book group's 125th book celebration Wednesday evening. We were meeting at a local restaurant to celebrate and have our book discussion...and I had made the arrangements and chose the next group of books to vote on. I did not want to miss it, so I tried to be good and listen to my body (something I'm not always good at) and rest aggressively (I love that term!). By Wednesday, though, I still felt awful. I stayed on the couch all day, took a longer nap than usual, and tried to avoid stress and exertion. Finally, at 5 pm, an hour before dinner started, I needed to make a decision. I went back and forth - yes or no? - and agonized over it. Finally, my son said, "Mom, what's the big deal? Just go and come home early if you need to." I realized he was right, and, completely fed up with missing out, I decided to go - I got dressed (in something other than sweats), even put on a little make-up, and I went! It felt like such a victory! And I did think I might be feeling better but wasn't sure I could trust my feelings.
The evening turned out great. I managed it fine, feeling better and better. I took of my shoes under the table and sat cross-legged on my chair to ward off OI. I also took Sudafed before I went - I was still congested but also figured it would be good for OI plus its stimulant effects wouldn't hurt! It was such a joy to be with other people and talk. I am normally a very social person - I was not meant to live an isolated life alone in my family room!
That turned out to be an OK decision. By pure dumb chance (and a lot of rest), I really did turn the corner that evening and started to slowly feel better. My stamina was still quite poor for the next few days even though I felt better, so I tried to take it easy and come back to "normal" life bit by bit. Yesterday, I managed a short walk with my husband at our local nature center - it was so wonderful to be outdoors and moving again!
Today is Sunday which is always a busy day for me - my older son comes home from college for a few hours, and I need to refill all our medications (12 weekly reminder boxes between the 3 of us!), plus I usually make his favorite pancakes for breakfast and a nice Sunday dinner. So, I am hoping not to overdo today so that Monday - this time - really will be a fresh start!
Monday, October 14, 2013
Movie Monday 10/14
sigh...still badly crashed, going on two weeks now. This is a bad one - perhaps the worst I've experienced in several years. I think it was triggered by exposure to my son's cold. By the end of last week, it had developed into bronchitis, and I was hoping that starting antibiotics would help. I felt even worse on Saturday - maybe from the exertion of going to the doctor's office and the drugstore - and was still stuck in horizontal position. I missed out on our local CFS group's potluck dinner, though my family still went. I felt a little better Sunday and thought it was finally over, but I woke up this morning worse than ever - again, I probably did too much, too soon yesterday.
So, I haven't had the energy for writing much here, but I have been posting brief updates and comments on my new Facebook page for Learning to Live with ME/CFS. If you are on Facebook, check it out and click "Like" to get blog updates and join the conversations!
Anyway, with all this time spent on the couch, I saw two movies this weekend, one with my family and one on my own when they all went out Saturday evening:
Friday night, my husband and I and our 15-year old son watched Iron Man 3, and we all enjoyed it very much! With all superhero/comic book movies that have come out in the past 5 years or so (and there have been a LOT of them), the Iron Man movies are my favorite, perhaps because of the considerable charms of their leading man, Robert Downey, Jr. In this one, Downey returns in the title role as Tony Stark, with his sidekick played by Don Cheadle (now called Patriot Man by the US government), and his now-girlfriend Pepper Potts, played by Gweneth Paltrow - how can you miss with these three accomplished actors? A new villain is on the scene, a mysterious terrorist who calls himself The Mandarin, played hilariously by Ben Kingsley. As with previous Iron Man movies, there is a lot of action, amazing technology, and cool stunts, as well as an engaging storyline and a nice dose of humor.
Saturday night, with my family away at the party I wanted to go to and maybe feeling a little sorry for myself, I cross-referenced 50 Best Romantic Comedies Of All Time with movies free on Amazon Prime and came up with Chasing Amy. Made in 1997, it stars a young Ben Affleck and Jason Lee as Holden and Banky, best friends and comic book writing partners. They meet another comic book creator named Alyssa whom Holden falls for almost immediately. There is a catch, though: Alyssa is openly, blatantly, and proudly gay. She and Holden become good friends, but he wants more. Meanwhile, Holden's close relationship with Alyssa begins to come between his and Banky's 20-year long friendship. I really liked this movie, especially the fact that it was unique and unlike any other movie plot I'd seen before. Not your typical light and fluffy rom-com, it has some funny moments but also delves fairly deep into serious questions of what is love, what is the difference between sex and love, and what does it take to build (or destroy) a relationship. The film earns it R rating with plenty of very frank talk about sex, so you might want to skip this one if that makes you uncomfortable. For me it was a welcome distraction from a rotten week, and I found that the characters really stuck with me afterward.
Have you seen any good movies lately?
P.S. If you are also interested in what I've been reading (plenty of reading time last week!), check out the Monday post on my book blog.
So, I haven't had the energy for writing much here, but I have been posting brief updates and comments on my new Facebook page for Learning to Live with ME/CFS. If you are on Facebook, check it out and click "Like" to get blog updates and join the conversations!
Anyway, with all this time spent on the couch, I saw two movies this weekend, one with my family and one on my own when they all went out Saturday evening:
Saturday night, with my family away at the party I wanted to go to and maybe feeling a little sorry for myself, I cross-referenced 50 Best Romantic Comedies Of All Time with movies free on Amazon Prime and came up with Chasing Amy. Made in 1997, it stars a young Ben Affleck and Jason Lee as Holden and Banky, best friends and comic book writing partners. They meet another comic book creator named Alyssa whom Holden falls for almost immediately. There is a catch, though: Alyssa is openly, blatantly, and proudly gay. She and Holden become good friends, but he wants more. Meanwhile, Holden's close relationship with Alyssa begins to come between his and Banky's 20-year long friendship. I really liked this movie, especially the fact that it was unique and unlike any other movie plot I'd seen before. Not your typical light and fluffy rom-com, it has some funny moments but also delves fairly deep into serious questions of what is love, what is the difference between sex and love, and what does it take to build (or destroy) a relationship. The film earns it R rating with plenty of very frank talk about sex, so you might want to skip this one if that makes you uncomfortable. For me it was a welcome distraction from a rotten week, and I found that the characters really stuck with me afterward.Have you seen any good movies lately?
P.S. If you are also interested in what I've been reading (plenty of reading time last week!), check out the Monday post on my book blog.
Friday, October 11, 2013
Learning to Live with ME/CFS on Facebook!
I am severely crashed this week - my once a year, major, stuck in bed kind of crash. At least it's usually just once a year now instead of all the time like it was at the beginning. I suspect my son's cold last week triggered this.
So, I haven't done any writing this week (or much of anything else for that matter), but I did manage to set up a Facebook page for this blog. I've been meaning to do this for a while. I've noticed blog traffic generally slowing down lately (not just on my blog), as more and more people "hang out" on Facebook and interact in groups there. Also, in managing my own Facebook account, I often have to say no to friend requests from blog readers and others in the online CFS community. I decided long ago to keep my Facebook "friends" limited to just family and close friends I know in person (or know very well) - otherwise, it just becomes too complicated for me to keep track of. But I know that some people with CFS use Facebook almost exlcusively to connect with others with CFS.
So, with all of those considerations, I now have a Learning to Live with ME/CFS Facebook page! Check it out and "like" it, and you will be able notified of new blog posts right on Facebook. I am also hoping it provides for more interaction among blog readers - now you can leave comments here or on the Facebook page. Even though I removed the word verification from the comment section on this blog (and believe me, I get some really awful spam because of that!), I still sometimes hear from people who say they wanted to comment but didn't know how.
So, "like" the new page, and I look forward to seeing you there!
I am still trying to figure out how to put a link to the Facebook page in the sidebar here, but hopefully that will be up by next week.
So, I haven't done any writing this week (or much of anything else for that matter), but I did manage to set up a Facebook page for this blog. I've been meaning to do this for a while. I've noticed blog traffic generally slowing down lately (not just on my blog), as more and more people "hang out" on Facebook and interact in groups there. Also, in managing my own Facebook account, I often have to say no to friend requests from blog readers and others in the online CFS community. I decided long ago to keep my Facebook "friends" limited to just family and close friends I know in person (or know very well) - otherwise, it just becomes too complicated for me to keep track of. But I know that some people with CFS use Facebook almost exlcusively to connect with others with CFS.
So, with all of those considerations, I now have a Learning to Live with ME/CFS Facebook page! Check it out and "like" it, and you will be able notified of new blog posts right on Facebook. I am also hoping it provides for more interaction among blog readers - now you can leave comments here or on the Facebook page. Even though I removed the word verification from the comment section on this blog (and believe me, I get some really awful spam because of that!), I still sometimes hear from people who say they wanted to comment but didn't know how.
So, "like" the new page, and I look forward to seeing you there!
I am still trying to figure out how to put a link to the Facebook page in the sidebar here, but hopefully that will be up by next week.
Monday, October 07, 2013
Movie Monday 10/7
Rough week followed by a rough weekend and an even rougher Monday. I've been in bad shape lately - seems to be a typical virally-induced crash since my son had a cold/sinus infection recently. Since I started Imunovir, I rarely get these kinds of crashes from virus exposure anymore, but it still hits me once in a while. And today's rainy weather probably isn't helping. Crazy illness, right? We ended up having to give up our plans of camping this past weekend, so it turned out to be an entire Plan B Week!
Anyway, we stayed home so I could rest. Our son had a friend sleep over Saturday night, so my husband and I watched At Any Price, a family drama starring Dennis Quaid and Zac Efron, as a 3rd generation farmer named Henry and his son, Dean, respectively. Henry has not only successfully run the farm he inherited from his own father; he has expanded it and his business steadily. He is an aggressive businessman, as the opening scene shows when he drags Dean along to the funeral of another local farmer in order to buy the man's land from his grieving family. Henry pins his hopes on his oldest, beloved son, Grant, taking over the family business, but Grant (who was a great student and football star) is off exploring the world and showing no signs of coming home. Younger brother Dean, who has lived in his brother's shadow and struggled for his father's approval, also has other plans - he wants to be a race car driver. Dean is good at racing and has made a name for himself; he's a local star who wins a lot of races and a lot of attention, from everyone except his dad. It's an intricate family drama with plenty of conflict, and the actors are all excellent, including supporting roles by Kim Dickens as Henry's wife and newcomer Maika Monroe as Dean's girlfriend. Both Henry and Dean are wrapped up in their own dreams with little regard for the people around them, and, of course, their goals are in direct conflict with each other. Their problems escalate - due to their own flaws and impulsive actions - and have far-reaching effects on their family, friends, and neighbors. It's a good movie (Ebert's very last "thumbs up" before his death!), but it's quite a downer. Even when things wrap up at the end and many of their problems have been resolved outwardly, it's not exactly a happy ending.
We have also been trying lots of new TV shows and enjoying some of our old favorites, with the fall TV season in full swing. With our 15-year old son, we've been enjoying Bones, Glee, Amazing Race, and lots of comedies (his favorites!) like New Girl, Big Bang Theory, and new shows like The Crazy Ones, the Michael J. Fox Show, Dads, and Brooklyn 99.
My husband and I like the new shows Sleepy Hollow and Blacklist and are enjoying our old favorites like Grey's Anatomy and Elementary.
Have you seen any good movies or TV shows lately?
Anyway, we stayed home so I could rest. Our son had a friend sleep over Saturday night, so my husband and I watched At Any Price, a family drama starring Dennis Quaid and Zac Efron, as a 3rd generation farmer named Henry and his son, Dean, respectively. Henry has not only successfully run the farm he inherited from his own father; he has expanded it and his business steadily. He is an aggressive businessman, as the opening scene shows when he drags Dean along to the funeral of another local farmer in order to buy the man's land from his grieving family. Henry pins his hopes on his oldest, beloved son, Grant, taking over the family business, but Grant (who was a great student and football star) is off exploring the world and showing no signs of coming home. Younger brother Dean, who has lived in his brother's shadow and struggled for his father's approval, also has other plans - he wants to be a race car driver. Dean is good at racing and has made a name for himself; he's a local star who wins a lot of races and a lot of attention, from everyone except his dad. It's an intricate family drama with plenty of conflict, and the actors are all excellent, including supporting roles by Kim Dickens as Henry's wife and newcomer Maika Monroe as Dean's girlfriend. Both Henry and Dean are wrapped up in their own dreams with little regard for the people around them, and, of course, their goals are in direct conflict with each other. Their problems escalate - due to their own flaws and impulsive actions - and have far-reaching effects on their family, friends, and neighbors. It's a good movie (Ebert's very last "thumbs up" before his death!), but it's quite a downer. Even when things wrap up at the end and many of their problems have been resolved outwardly, it's not exactly a happy ending.We have also been trying lots of new TV shows and enjoying some of our old favorites, with the fall TV season in full swing. With our 15-year old son, we've been enjoying Bones, Glee, Amazing Race, and lots of comedies (his favorites!) like New Girl, Big Bang Theory, and new shows like The Crazy Ones, the Michael J. Fox Show, Dads, and Brooklyn 99.
My husband and I like the new shows Sleepy Hollow and Blacklist and are enjoying our old favorites like Grey's Anatomy and Elementary.
Have you seen any good movies or TV shows lately?
Thursday, October 03, 2013
ME/CFS Case Definition - News and Views
There have been some startling and ground-breaking developments in the ME/CFS world in the past few weeks. I have postponed writing about them because I wanted to have the mental energy to consider all sides of the issues and to think it through myself. Things have been hectic here at my house, and I've had two rough weeks CFS-wise (probably because of my son's cold and sinus infection). I didn't want to delay getting this news out to you any longer.
So, here is a brief recap of the events of the past week or two. I have tried to keep things simple here, but you can click any of the links for more detailed information:
1. At the end of August, the US Department of Health & Human Services (HHS) announced that they planned to start a process to develop a clinical case definition of ME/CFS (i.e. a definition of the illness that doctors can use to diagnose patients). Now, this is clearly something that is desperately needed for ME/CFS patients; however, the proposal also named a single contractor, Institute of Medicine (IOM), to develop the criteria. This rang some alarm bells in the ME/CFS patient community because IOM has been working on a similar definition for Gulf War Illness (a chronic illness that has a lot in common with ME/CFS). There have been some concerns raised about this IOM process with Gulf War Illness, as described in the article linked to above.
2. That HHS announcement set off a complex chain reaction with the community of ME/CFS patients, doctors, and experts. Many people, fearing that IOM would approach this project without involvement from bona fide ME/CFS experts and patient input, participated in a letter-writing campaign to HHS to stop the IOM initiative. Apparently, all of the letters had some effect because two major things happened on the same day in late September:
4. Through the Freedom of Information Act (and thanks to Jennie of the Occupy CFS blog), details of the IOM's statement of work (SOW) have been published and disseminated. You can read the details in this blog post that Jennie wrote. It does appear that IOM is saying all the right things with respect to stakeholder involvement and a solid process that uses existing data, criteria, and information.
5. Meanwhile, in social media and through e-mail, comments, opinions, and a fair amount of vitriol have been flying back and forth among patients. Most don't trust the government (with good reason based on past problems), many are applauding the 35 experts, some are attacking experts whose names didn't appear on the list. Unfortunately, emotions are running high and not all of the discourse is respectful and constructive; many people are being reminded of the rifts that occurred in our patient community during and after the XMRV research a few years ago.
6. After carefully considering all the facts and input from patients and their own Board, the CFIDS Association of America just announced its position on the HHS/IOM contract to develop diagnostic criteria for ME/CFS. Their statement provides a nice, concise summary of the facts, so it is helpful to read from that perspective. They are basically saying that they want to support this process as it moves forward, using their expertise and resources in the best way possible. They say that the CCC is a great starting point, that the IOM process could have value if it is done as laid out now, and that the IOM needs to be held to its commitments, with swift action taken if they fall short of their promises (to include patient input, to include ME/CFS experts, to use existing criteria, studies, and research as a starting point, etc.).
As for me, I am mostly in agreement with the CAA's statement. Some in the patient community no longer trust CAA because they feel that by working directly and closely with the government (CDC, NIH, HHS) the Association has turned its back on patients. I have a different view. I think that realistically, nothing major is going to happen for our illness unless the government agencies who control all aspects of health management (research, treatments, doctors, etc.) are on board. I feel that the best way to move forward into a better future - one that includes clear diagnostic criteria and effective treatments - is to work together with these agencies, in a cooperative and respectful way.
From a more personal perspective, I try to stay away from all of the anger, bitterness, and vitriol that crop up during controversies like this. Those kinds of negative emotions just make me sicker - often far sicker than even physical exertion - and I simply can't afford that. Of course, I am angry over past mistakes the government has made and its past ignorance of ME/CFS and lack of support. But I can't let that anger get the best of me and make me even sicker. That's in the past. More recently, there have been positive signs: CFSAC meetings incorporating more patient interaction and input, FDA workshops held to gather patient input, and even this very initiative. I honestly believe that most people involved with these processes - on all sides - believe they are doing the right thing. Though we have seen single cases in the past where an individual was doing something wrong and knew it (for instance, the infamous misappropriations of funds by the CDC), those are the exceptions. I firmly believe that taking sides and turning this into an emotional battle will not benefit anyone.
Look at all of this from the positive side - the HHS finally wants to develop a real clinical case definition for ME/CFS (and they are even calling it ME/CFS!). Wow. That is something we have desperately needed for decades. Indulge for a moment in a dream of how things could change over the next few years: there could be a single, agreed-upon definition - developed by patients and experts - that all medical personnel have access to and are educated about. Wow!
Yes, there are lots of potential problems along the way, plenty of challenges to face, and a lot of hard work to do, but let's take a moment to celebrate this momentous occasion and get ready to move forward!
So, here is a brief recap of the events of the past week or two. I have tried to keep things simple here, but you can click any of the links for more detailed information:
1. At the end of August, the US Department of Health & Human Services (HHS) announced that they planned to start a process to develop a clinical case definition of ME/CFS (i.e. a definition of the illness that doctors can use to diagnose patients). Now, this is clearly something that is desperately needed for ME/CFS patients; however, the proposal also named a single contractor, Institute of Medicine (IOM), to develop the criteria. This rang some alarm bells in the ME/CFS patient community because IOM has been working on a similar definition for Gulf War Illness (a chronic illness that has a lot in common with ME/CFS). There have been some concerns raised about this IOM process with Gulf War Illness, as described in the article linked to above.
2. That HHS announcement set off a complex chain reaction with the community of ME/CFS patients, doctors, and experts. Many people, fearing that IOM would approach this project without involvement from bona fide ME/CFS experts and patient input, participated in a letter-writing campaign to HHS to stop the IOM initiative. Apparently, all of the letters had some effect because two major things happened on the same day in late September:
- The HHS officially announced that the Institute of Medicine (IOM) would immediately begin a study on developing Diagnostic Criteria for ME/CFS, in response to a 2012 CFSAC (CFS Advisory Committee) recommendation and that the process will include stakeholder input, including patients and practicing clinicians. You can read the rest of the details about the process at the link above.
- A group of 35 of the top U.S. clinicians and researchers in ME/CFS sent a letter to HHS Secretary Sebelius, asking her to stop the IOM process and announcing that they had come to agreement on a single clinical case definition that's already been developed, the Canadian Consensus Criteria (CCC). This is huge and unprecedented! The 35 signatories include many of our most respected ME/CFS experts - names that you have probably heard over and over again through the years, including Dr. David Bell, Dr. Leonard Jason, Dr. Daniel Peterson, Dr. Nancy Klimas, and many more. Patients gave a collective cheer! For this group of highly regarded experts to come together and announce their solidarity behind a single case definition is a huge step forward. You can read their letter here and further discussion and explanation here.
4. Through the Freedom of Information Act (and thanks to Jennie of the Occupy CFS blog), details of the IOM's statement of work (SOW) have been published and disseminated. You can read the details in this blog post that Jennie wrote. It does appear that IOM is saying all the right things with respect to stakeholder involvement and a solid process that uses existing data, criteria, and information.
5. Meanwhile, in social media and through e-mail, comments, opinions, and a fair amount of vitriol have been flying back and forth among patients. Most don't trust the government (with good reason based on past problems), many are applauding the 35 experts, some are attacking experts whose names didn't appear on the list. Unfortunately, emotions are running high and not all of the discourse is respectful and constructive; many people are being reminded of the rifts that occurred in our patient community during and after the XMRV research a few years ago.
6. After carefully considering all the facts and input from patients and their own Board, the CFIDS Association of America just announced its position on the HHS/IOM contract to develop diagnostic criteria for ME/CFS. Their statement provides a nice, concise summary of the facts, so it is helpful to read from that perspective. They are basically saying that they want to support this process as it moves forward, using their expertise and resources in the best way possible. They say that the CCC is a great starting point, that the IOM process could have value if it is done as laid out now, and that the IOM needs to be held to its commitments, with swift action taken if they fall short of their promises (to include patient input, to include ME/CFS experts, to use existing criteria, studies, and research as a starting point, etc.).
As for me, I am mostly in agreement with the CAA's statement. Some in the patient community no longer trust CAA because they feel that by working directly and closely with the government (CDC, NIH, HHS) the Association has turned its back on patients. I have a different view. I think that realistically, nothing major is going to happen for our illness unless the government agencies who control all aspects of health management (research, treatments, doctors, etc.) are on board. I feel that the best way to move forward into a better future - one that includes clear diagnostic criteria and effective treatments - is to work together with these agencies, in a cooperative and respectful way.
From a more personal perspective, I try to stay away from all of the anger, bitterness, and vitriol that crop up during controversies like this. Those kinds of negative emotions just make me sicker - often far sicker than even physical exertion - and I simply can't afford that. Of course, I am angry over past mistakes the government has made and its past ignorance of ME/CFS and lack of support. But I can't let that anger get the best of me and make me even sicker. That's in the past. More recently, there have been positive signs: CFSAC meetings incorporating more patient interaction and input, FDA workshops held to gather patient input, and even this very initiative. I honestly believe that most people involved with these processes - on all sides - believe they are doing the right thing. Though we have seen single cases in the past where an individual was doing something wrong and knew it (for instance, the infamous misappropriations of funds by the CDC), those are the exceptions. I firmly believe that taking sides and turning this into an emotional battle will not benefit anyone.
Look at all of this from the positive side - the HHS finally wants to develop a real clinical case definition for ME/CFS (and they are even calling it ME/CFS!). Wow. That is something we have desperately needed for decades. Indulge for a moment in a dream of how things could change over the next few years: there could be a single, agreed-upon definition - developed by patients and experts - that all medical personnel have access to and are educated about. Wow!
Yes, there are lots of potential problems along the way, plenty of challenges to face, and a lot of hard work to do, but let's take a moment to celebrate this momentous occasion and get ready to move forward!