Saturday, May 31, 2014

Quote It Saturday 5/31

Writer and poet Maya Angelou died this week at age 86, and the world has lost an amazing, joyful, and wise person. I only discovered Angelou's writing for myself last year, when I read her first memoir, I Know Why the Caged Bird Sings, for Banned Books week. I was blown away by her vivid writing, her honesty, her humor, and her dignity in this book that tells the story of her childhood. You can read my full review here - I highly recommend the memoir and can't wait to read her others.

Here are a couple of quotations from that book that really struck me and seemed relevant to my own life:

"The quality of strength lined with tenderness is an unbeatable combination, as are intelligence and necessity when unblunted by formal education."

"At fifteen life had taught me undeniably that surrender, in its place. was as honorable as resistance, especially if one had no choice."

          - I Know Why the Caged Bird Sings by Maya Angelou

That second one is especially applicable to life with chronic illness and is a lesson that it took me a while to learn, as steeped as I was in our culture of keep fighting and never give up. I will always keep fighting for effective treatments and education of both the medical community and the general population, but I understand now that I can not always fight back against my own illness and that sometimes I make more progress when I give in to it and surrender to the need to rest. That kind of surrender is not defeat but strength.

I was unfamiliar with Angelou's poetry until this week, when people began posting quotes and videos after she died. This particular poem, And Still I Rise, really touched me, as did her own performance of it:

I think I've watched it a dozen times this week, and I hope you enjoy it, too. I think it embodies our lives with chronic illness and the kind of attitude I want to have. I just love the joy and laughter that surround Maya Angelou's work - yes, she wrote about suffering, too, but as this poem shows, in her world, it is always overshadowed by joy.

Have a great weekend!

Thursday, May 29, 2014

CFSAC Meeting June 16-17

The 2014 Spring Meeting of the CFS Advisory Committee (CFSAC) will be held on Monday, June 16, 2014, from 12:00 p.m. until 5:00 p.m. (ET) and Tuesday, June 17, 2014 from 9:00 a.m. to 5:00 p.m. E.T. and take place at the Department of Health and Human Services, Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Great Hall, First Floor, Washington, D.C. 20201. CFSAC is a part of the U.S. Department of Health & Human Services and usually meets twice a year.

The entire 2-day meeting is open to the public, with time set aside for public comment. If you'd like to attend the meeting or provide public comment (you don't have to be physically present to give testimony - you can do it via phone or ask for someone else to read your testimony during the meeting), you can register at this website. You have to submit a copy of your written testimony when you register, but you can make changes up until the meeting. If you are able to attend in person, it is a wonderful experience to meet others in a similar situation.

I have attended a CFSAC meeting twice before, once with my whole family, and presented testimony both times. Here is a video of our testimony from one year, with my sons on either side of me (my husband was there, too, but got cut out of the video!):

The meeting will also be live-streamed through this website, and you can view archived video of past meetings here.

In the past 10 years, the ME/CFS patient community has made great strides in joining together and making our voices heard, but we need for all patient voices to be heard! Make plans to participate in CFSAC in any way that you can - whether it's watching the live webcast from home (they keep track of how many people sign up and watch), submitting testimony to be read over the phone or by proxy, or actually attending the meeting, your voice as a patient can be heard and counted.

I haven't decided yet whether I can attend in person this time - my husband will be out of town that week - but I do plan to submit testimony and watch as much as I can online, if I can't go.

Tuesday, May 27, 2014

Finding Meaning From Suffering

My life tends to be super-busy and hectic, but I always try to take a few minutes to myself on Sunday mornings to watch an inspirational TED talk. The one I watched this week was wonderful, and I wanted to share it with all of you!

The speaker talks about taking the suffering in our lives and finding meaning from it and about how the difficult challenges we have faced helped to make us who we are. I found myself nodding along many times, laughing, and even crying at the end. We have to believe that these challenges we are facing will help to shape the meaning and joy in our lives. This has certainly been true for me already, and his words really touched me when I think about how much my older son has suffered. There's no doubt that it has already helped to shape who he is.

I hope you find this as inspiring as I did! Have a wonderful day, and be sure to take a few moments (at least) to appreciate the simple joys in your life.

Monday, May 26, 2014

Movie Monday 5/26

Happy Memorial Day, everyone! I hope that you have enjoyed the holiday weekend, if you live here in the US. The extra day gave us a little breathing room for a change, allowing us to have some fun as well as get some things done around the house and yard. My husband and I went a little crazy and ditched the Paleo diet for a few days (perhaps the result of my emotional downturn last week!) - we had burgers and fries from Five Guys on Friday (oh, those amazing fries!), ordered our favorite Pad Thai noodle dish at a Thai restaurant Saturday night, and ate real brownies that my youngest son made last night. We are trying to get back on track today!

One fun thing we did that was good for us, too, was to watch a couple of the movies that everyone's been talking about (better late than never!):

Friday night, we watched Monuments Men, starring, co-written by, and directed by George Clooney, with an all-star cast including Matt Damon, Bill Murray, John Goodman, and Cate Blanchett. This movie focuses on a little-known but fascinating aspect of World War II: how a small group of art experts pulled together as a ragtag military group to recover some of the world's greatest works of art from the Nazis at the end of the war. It's a great story, and the talented cast is fun to watch. Our only complaint was that the tone is a bit uneven in the movie. It's a serious subject, of course - World War II - that Clooney approaches with a light hand. Some scenes are sad, there is plenty of suspense, especially toward the end, but many scenes in the movie have a humorous tone, with background music more suited to a Laurel & Hardy movie. It's an enjoyable movie - and a fascinating subject - but there are times when the light tone just doesn't feel right. But overall, I would still recommend it; we enjoyed it, and it was a fun history lesson.

Saturday night, we watched Argo, a movie set during the Iran Hostage Crises in the 70's and based on actual events that were only recently declassified. Ben Affleck stars as a CIA operative whose specialty is extracting people from dangerous situations. In the midst of the crisis, where over 50 U.S. citizens were taken hostage in the U.S. embassy in Iran by militant revolutionaries, six embassy employees escaped without notice and took refuge at home of the Canadian ambassador. For their own safety, the existence of the six was kept a secret from everyone except their families. After 60 days of not leaving the house, their situation was becoming more and more risky, as the Iranian militants began to figure out that some employees were missing. In desperation, Affleck's character, Tony Mendez, was called in, and he came up with a crazy idea: to pose as a Hollywood team scouting a new movie location in Iran and bring the six embassy employees home with him. It's an engrossing, frightening movie full of suspense (toward the end, I was yelling at the TV screen!). John Goodman and Alan Arkin co-star as a Hollywood special effects guy and producer, respectively, and are fabulous in their roles, bringing a needed touch of humor to the tense story. Truth really is stranger than fiction, and this exciting, unbelievable movie proves that. Highly recommended, if you don't have a problem with tension and suspense.

Have you seen any good movies lately?

Saturday, May 24, 2014

Quote It Saturday 5/24

Several years ago, another blogger hosted a weekly meme called Quote It Saturday which I really enjoyed. Even though she stopped hosting it, I decided to restart the weekly tradition. I love to read, and I love it when a books speaks to me, getting to the heart of something I feel or have experienced myself, even if the character's experiences are different than mine. I keep a quote journal where I write down quotes from the books I read, and that's what I draw from for Quote It Saturday. You can read past Quote It Saturday posts here - I didn't have a category for quotes, just for books, so this list includes both past Quote It Saturday posts, as well as book reviews, and other posts about books. So, here we go, reviving an old tradition...

Today's quote is from a fascinating novel I recently read for my online family book group. One of my cousins chose the novel Moloka'i by Alan Brennert (you can read my review here). It's about a leper colony on an isolated part of the island of Moloka'i in Hawaii. It opens near the turn of the century as a little girl, the main character of the novel, is torn away from her family and sent to the colony to live. The historical setting of the novel is fascinating - I knew nothing at all about leprosy or the leper colonies - but I also related to the struggles of the characters in dealing with their horrible and isolating illness.

One of the things I liked most about the novel was the positive mindset of the main character and many of the other characters as well. You would think that a book about leprosy would be depressing, but it wasn't; it was full of hope and joy, even amidst suffering. This passage about the main character as a young woman sums that up:
"...and as she rode into Kalaupapa...she felt a surge of joy. Friends called out to her; the surf beckoned to her; her horse, on seeing her, happily nuzzled her neck. This was life, and if some things were Kapu (forbidden), others weren't; she had to stop regretting the ones that were and start enjoying the ones that were not."
          - Moloka'i by Alan Brennert
That perfectly captures the way I believe I should live my own life, post-illness. I'm not always successful - I got pretty depressed this week and was wallowing in self-pity and mourning for a few days - but it is what I strive for. I am trying to make a fresh start today. As soon as I got up, I dragged my lounge chair out onto the deck. It is so beautiful and peaceful this morning out here - quiet (no lawnmowers or leaf blowers out yet!), the only sounds the birds singing and the trees blowing in the wind, with cool, fresh air.

I am trying to find my way back to a place of peace and joy, and this passage helps. Hope it helps you, too. And I highly recommend the novel for anyone who enjoys reading.

Enjoy the weekend!

Thursday, May 22, 2014

Bartonella, Part 2??

Maybe I should have just titled this post Drowning in Medical Uncertainty Again...because that is the way I am feeling today. I took my youngest son to see our Lyme doctor in NJ for an initial visit and an evaluation for bartonella, a tick-borne infection that is even more common than Lyme disease in some areas (including ours). Now we wait for blood test results (which are inaccurate and very prone to false negatives but might provide more information). The last thing I want is for another one of us to have to deal with tick-borne illness, but we wanted to get him evaluated and not wait too long like we did with our older son.

A little background, so you can understand...

Our 16-year old son is actually very healthy, in spite of a long list of diagnoses:
  • Chronic Fatigue Syndrome  (mild)
  • Orthostatic Intolerance (OI), including both POTS and NMH
  • Joint Hypermobility Syndrome (JHS), including recent incidence of TMJ (temporormandibular joint disorder)
Despite that alphabet soup of acronyms, he is in great shape. Simple treatment with Florinef for OI (starting over 8 years ago) left him pretty much symptom-free for CFS and OI. He goes to school full-time at a challenging charter school for math & science, can do anything he wants, and even plays soccer competitively. In the last few years, his only health problems have been multiple knee surgeries for cartilage problems, which may be related to his hypermobile joints or perhaps just from playing soccer.

Back in February, we noticed something strange - a line across his back that looked like a stretch mark. We recognized this line from our older son's experiences with bartonella (he also has Lyme and babesia, as well as CFS). Our younger son didn't have any other symptoms, though, so we took a wait-and-see attitude. Now, 3 months later, there are 3 of those lines on his back. He still doesn't seem to have any other symptoms that would indicate Lyme or bartonella, but we wanted to be proactive and get him evaluated early.

This was a mistake we made with our older son. Our pediatrician kept reassuring us that those lines were stretch marks - that didn't make any sense to us, but we accepted her explanation...for years. Eventually, we got to the point described in my first bartonella post and figured out for ourselves that he had it. Unfortunately, by that time, the tick infections had been present for many years. Now, four years after diagnosis, our older son has gone through some terrible times during his treatment. He is getting better slowly, but it has been a long and difficult road. We don't want the same thing to happen with our younger son.

So, I took him to see our Lyme doctor today, who agreed that the lines look like bartonella but was interested to hear that he didn't have any symptoms. Our son, meanwhile, is angry that I even took him to see the Lyme doctor - he says it's a waste of money, that he's not sick. And now we wait for the blood test results...which I know from all of our other experiences are a very poor measure of whether Lyme and other tick infections are actually present. As I explained to my son today, any positive result for any of the tick infections will be evidence that he was bitten by an infected tick.

I've been having a rough week, so all of this is just more stress piled on top. I have to keep reminding myself not to jump ahead and worry - one step at a time.

Wednesday, May 21, 2014

Feeling Frustrated

I am feeling down today. Just feeling worn out, tired, and sick of the same old stuff. Maybe it's the weather (rainy and dark) or maybe I'm mildly crashed from going to the grocery store yesterday, but I am just feeling fed up with this cautious, exhausting life.

I spent an hour on Skype this morning with our biochemist/dietician consultant, but rather than leaving me feeling empowered by new information, I just felt overwhelmed and frustrated.

I have spent the past 11 years of my life researching, reading, seeing doctors, getting blood tests, and trying one treatment after another. Many of them have helped a little bit (and believe me, I am grateful for that), but nothing ever helps a lot. Bottom line is that there is no cure for this wretched illness (YET!).

I do know I am fortunate for all of the treatments that have helped a little - beta blockers, inosine/Imunovir, low-dose naltrexone, correcting sleep dysfunction, and more. I am grateful that I am not bedridden or even spending most of my days lying down, like I was a few years ago. I am grateful that I no longer experience month-long crashes every time I'm exposed to a virus. I am hugely grateful that I can go to the grocery store or take a short walk on a good day.

But. But, every day is still a never-ending struggle. Every moment of every day requires careful thought, caution, measurement, and hard work. I miss being able to live freely, being able to able to think of the word I want!!! Before CFS, if I had a down day like this, do you know what I would do? I'd exercise. Just get outside and take a long hike with a friend or my husband or go to a class at the Y and sweat my worries away. I miss that freedom.

Oh, shoot. I thought that writing down my feelings might help me feel better, but now I am crying. I guess sometimes you just have to go with the feelings and let them out. I need to go pick up my son from school now.

Thanks for listening. I'm sure tomorrow will be a better day.

Tuesday, May 20, 2014

Movie Monday 5/19

Yes, I am well aware that it is now Tuesday afternoon...yesterday was very frustrating, with over 400 e-mails in my inbox from the weekend. And I didn't want to miss Movie Monday completely because we finally watched a movie this weekend after months of sticking to TV shows.

My husband and I actually got to go out to dinner together twice this weekend (once alone and once with friends) - a rare event! So, a wild weekend in CFS terms, but by 8 pm, I was still wiped out, so we returned home and watched Gravity, a movie we've both wanted to see since it was released. It didn't disappoint. Our son says he's not interested in seeing it because it sounds boring, "like Deep Water only in space." He and his brother consider Deep Water the worst movie ever made, so that tells you what he thinks! He couldn't have been more wrong. Gravity is nonstop suspense from the beginning to the very last moment. Sandra Bullock and George Clooney star as two astronauts on a NASA mission in space. Bullock is a doctor who is in space for the first time, and Clooney is the (handsome, charming) experienced astronaut. As the movie opens, everything is going well, they are chatting amiably with mission control in Houston, and it looks like the mission will be a success. Then, things begin to go wrong. Before long, they are the only two people left alive on their shuttle, and all communications with Houston have been cut off. And then more goes wrong. I recently heard this described as science fiction, but it's very realistic and is more of a survivor thriller. Perhaps the only technical aspect not actually available yet today (I think?) is the jet pack Clooney's character is testing that allows him to be out of the spacecraft and not tethered to it. Both actors do a great job in their roles, especially Bullock, and it is tense all the way through (so if suspense keeps you up at night, better to skip this one). We both enjoyed it very much.

Have you seen any good movies lately?

Thursday, May 15, 2014

Inosine vs. Imunovir for ME/CFS

A few weeks ago, I mentioned here that there was a shortage of Imunovir, the prescription immune modulator that my son and I take, and that we would be trying inosine (the generic equivalent, sold in the U.S. and elsewhere as a supplement) as an alternative. Refer back to that post for details on what Imunovir and inosine do.

So, I have now been on inosine for three weeks (and my son for the past two weeks), and I am happy to report that it seems to be working just as well as Imunovir did for us! In fact, we were both exposed to some viruses recently, and the resulting crash lasted only a few days for each of us (that kind of virally-triggered crash used to knock us each out for a month or more). I really can't feel any difference at all between Imunovir (the brand name prescription drug manufactured in Ireland) and inosine (the generic alternative sold in the U.S. as a supplement).

The brand we have been using is Source Naturals, which I bought through amazon for a fraction of the cost of the Rx (about one-sixth) free shipping instead of $30 to ship from Canada!

So, all in all, things are going well. At this point, given the huge price difference, we will probably stick with inosine even if Imunovir becomes available again.

NOTE, as of September 2019: Source Naturals is still our favorite brand of inosine, but all brands of inosine have been unavailable from Amazon lately, so I have been buying ours from e-Vitamins, which has low prices and fast shipping:

Source Naturals Inosine  - 120 Tablet

Wednesday, May 14, 2014

Paleo Chocolate-Nut Butter Smoothie

[Updated 8-15-23]

This smoothie is not only delicious and nutritious but will also help to improve glutathione levels, which should help your mitochondria, immune system, and energy production. What a package deal! And if you're on a low-sugar diet, it tastes decadent, even though it isn't. 

This is a recipe we made up when we started eating a Paleo/anti-candida diet. It has become a favorite at our house. My son especially loves these, and I eat them frequently, too. It works equally well for breakfast or lunch (or dinner or a snack!).

NOTE: A word on whey: I had read for many years ago that whey protein powder is good for people with ME/CFS because we have low glutathione levels, and whey is a glutathione precurser. However, I always assumed that I couldn't try that particular treatment because I am intolerant to dairy. When we started on our new diet in February 2014, our dietician explained to us that most people who are dairy intolerant can tolerate whey. It is the part of the milk that is left after the curds are removed (remember Little Miss Muffet and her curds and whey?), and the curds contain most of the casein and lactose, which account for most dairy sensitivities and allergies. So, we tried it and found that both my son and I tolerate it pretty well. I later found that I am mildly intolerant to whey if I eat it too often, but if I have a whey smoothie 2-3 times a week, I'm fine. More tips on how to increase glutathione.

Just be sure to read labels and choose the right kind of whey protein powder. Some contain all sorts of additives (including grains that should be avoided on paleo or anti-candida diets). This article on whey and glutathione explains what to look for. Generally, look for undenatured whey protein powder and a label with a very limited ingredients list. This is the brand we like.

NOTE: For those struggling with severe yeast overgrowth, as I am, I have included options to make it even more anti-candida-friendly. And please check out my blog post on Treating Yeast Overgrowth/Candida.

Chocolate-Nut Butter Smoothie
Makes 1 serving
We often double the recipe for 2 people
Extra anti-candida (no sugar) options in ( )

1/2 - 1 banana, cut-up and frozen (can substitute ice cubes made from dairy-free milk of your choice)
1/4 of an avocado (a half for anti-candida since it contains almost no sugar)
1/2 cup frozen organic blueberries (good on anti-candida diet; they are actually antifungal)
1 Tbl sunflower seed butter or any nut butter or natural peanut butter (check label for sugar) *
2 Tbl raw cacao powder (this is the raw form of cocoa and full of antioxidants)
1/2 tsp stevia or xylitol (this brand of stevia and xylitol actually fight against yeast)
1 cup unsweetened coconut milk or your favorite unsweetened non-dairy milk substitute - as much as needed for the desired thickness

1 Tbl MCT oil - good for energy and yeast overgrowth - our favorite whey powder includes this
1-2 scoops creatine powder (an unflavored, no-additives, fine powder works best - provides energy and helps with exercise tolerance)
3 ice cubes made from unsweetened nondairy milk (if not using frozen fruit)
1 tsp alcohol-free vanilla * (if not in your whey powder) 
1-2 scoops plain undenatured whey protein powder (depends on the size of the scoop - about 31g)
* Trader Joe's is a great source for inexpensive, delicious sunflower butter, nut butters, and peanut butter. Wherever you buy, check the ingredients list on the label - the brands with only seeds, nuts, or peanuts (with or without salt) are best. They also have excellent, inexpensive alcohol-free vanilla extract.

  1. Put all ingredients except whey in a blender, and blend on high until smooth. Add more or less nondairy milk to get the consistency the way you like it.
  2. Add whey powder and gently stir in (I use a small silicone spatula) until full combined. Some sources say that using a blender on undenatured whey powder will damage the delicate proteins, leaving it less beneficial, so I stir it in at the end.
© Suzan L. Jackson 2023
(Do not reprint or publish without written permission from the author)

We love our Ninja blenders for smoothies! We use this one for doubles and this one for single servings.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Monday, May 12, 2014

International ME/CFS Awareness Day 2014

It's International ME/CFS Awareness Day!

Looking for ways to help spread the word? Here is what I am posting on my Facebook wall for my friends and family (to keep it manageable, I only friend my family and in-person friends on Facebook), along with a link to this post:

"Today is International ME/CFS Awareness Day. ME is Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the cringe-worthy name the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and both of my sons have had it since 2004. Scientists have confirmed that this disabling illness has both genetic and infectious components, though they have not yet pinpointed the cause(s) or cure. At its heart, ME/CFS is an immune system disorder, causing parts of the immune system to over-react and parts of it to under-react. In a devastating cascade of effects, it causes problems with the immune, endocrine, and nervous systems. The mitochondria (i.e. energy producers) in our cells don't work properly and don't process oxygen normally so that even mild exertion - like a short walk or going up the stairs - can result in suddenly feeling as if we have the flu, and those effects can last days or even weeks. Thankfully, Craig's ME/CFS is mild and easily controlled with medication. Jamie and I have both had some mild success at reducing symptoms though we take piles of pills every day and our lives are still dramatically different than they were before ME/CFS (Jamie also has Lyme and 2 other tick infections, too). We are the lucky ones; many people with ME/CFS are housebound or even bedridden. For more information and to learn how to help, check out this blog post." (with a link to here)

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by the CFIDS Association at Solve CFS
  2. An Overview of Chronic Fatigue Syndrome by Phoenix Rising
  3. The CDC's information on CFS
  4. My own article, CFS: An Invisible Illness, published on Lively Woman (now BlissTree)
  5. Our public testimony on pediatric CFS at last year's CFSAC meeting.
Happy Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)

Wednesday, May 07, 2014

Paleo Coconut Custard Pudding

I Tweeted today about the homemade Paleo Coconut Custard Pudding I made myself for my sore throat, and several people asked for the recipe. so I thought I'd post it here.

Just a quick diet update...we are still eating mostly Paleo/anti-candida diet, as I describe in this post on diet. My son is still doing well, so the dietician has allowed him a wider variety of fruits and vegetables now, and even red-skinned potatoes once a week. He's also allowed nuts now. He doesn't really like them on their own, but using nut flours gives me a lot more Paleo baking options. We are still very low-sugar due to our history with yeast overgrowth (both my son and I), so you will see that this recipe calls for a bit of stevia. If sugar is not a problem for you, you can just use the full amount of maple syrup or honey (as indicated below).


Paleo Coconut Custard Pudding
(6 servings)

When I was a little girl and got sick (I used to get strep throat a lot), my mom would make me classic baked custard to soothe my sore throat. Custard is still one of my favorite treats, so I came up with this non-dairy, low-sugar version and added coconut (which I also love and is anti-fungal). If you don't like coconut, you can leave out the shredded coconut and/or substitute some other non-dairy milk.
4 eggs
2 cups unsweetened coconut milk (the kind in a carton)
1/2 cup maple syrup or honey (microwave honey for 20 seconds to liquefy)
          OR Low-sugar version: 2 Tbl honey + 2 tsp. stevia
1/4 tsp. salt
1/2 cup unsweetened shredded coconut (optional)
Preheat oven to 325 degrees.
Whisk eggs and combine all ingredients. Add shredded coconut last and stir to combine.

Pour mixture into glass custard cups.

Set cups into a large baking dish, and add boiling water to the large dish (around the cups) to a depth of about 1 inch.

Bake 30-40 minutes or until knife inserted into center of custard comes out clean.

Remove from oven and remove custard cups from water bath (carefully!). Let cool and then refrigerate to chill.
© Suzan L. Jackson 2020
(Do not reprint or publish without written permission from the author)

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

These are the brands we like:

 .    .    .   

Tuesday, May 06, 2014

What's Happening in the ME/CFS World?

Between other commitments, including my family and the ME/CFS Parents group I started on Facebook, and my recent focus on researching and writing about one particular aspect of ME/CFS treatment - methylation and B12 supplementation - I have been having trouble staying up-to-date on what's going on in the wider world of ME/CFS. And there is a lot going on!

This is actually a very exciting time in the ME/CFS world, with new research opportunities, government initiatives, an effort to decide on a single case definition, efforts in the FDA, and more. Some of these efforts are wonderful advances forward, some include participants who need better direction from the patient community, but all of them represent opportunities for potential advancement for our illness which has historically been ignored.

Since I haven't been keeping up very well, that means that I haven't been writing much here about these events and helping YOU to keep up. I am going to try to rectify that by at least posting links here more frequently so that you can keep up to date, if you want to.

The #1 best source for staying abreast of this sort of news related to politics, research, government, and the whole ME/CFS community is Jennie Spotila's blog, Occupy CFS. Jennie is a friend of mine who used to work as a lawyer. I deeply admire both her tireless advocacy efforts and her talents and abilities to stay up-to-date on all of this and explain it clearly and fully in her blog posts. So, please sign up for her blog updates, if you'd like to know what's going on in the larger ME/CFS world in a timely manner.

Here are a few of Jennie's recent posts, to bring you up-to-date on important, ongoing efforts.

Research Roadmap
Back in mid-April, Jennie wrote about a Research Roadmap, a fascinating effort from within the CFS Advisory Committee (CFSAC) to bring greater attention and funds to ME/CFS research from the larger medical research community. This sounds like a very worthwhile effort (though it may take a while to get there), and I look forward to hearing more.

FDA Draft Guidance for ME/CFS
Jennie also reported that the FDA hosted a webinar on April 23 to explain their new Draft Guidance for Industry CFS/ME: Development Drug Products for Treatments. This is guidance that the FDA provides to drug developers. This is great news - FDA is actively trying to communicate to drug developers about ME/CFS and providing this guidance can help developers to properly design their drug trials. In her blog post, Jennie explains the details from the webinar, with links to more information and a link to submit comments.

IOM Diagnostic Criteria for ME/CFS
Have you heard about this government-based effort to develop a single agreed-upon set of diagnostic criteria for ME/CFS? This one started last year, and at first glance, this would appear to be great news. A single case definition for ME/CFS that all parties (government, patients, researchers) agree to is an essential element that has been missing from the ME/CFS world for far too long. However, there are some serious concerns with the effort. The Institute of Medicine (IOM) was chosen to lead the effort, and their efforts last year with Gulf War Syndrome (which has a lot in common with ME/CFS) were disastrous.

In short, this new IOM effort to define diagnostic criteria for ME/CFS has already attracted a lot of controversy. Many people - including some top ME/CFS clinicians and many patients - believe this effort is completely unnecessary and that a perfectly good definition already exists - the Canadian Consensus Criteria (CCC) - that just needs to be adopted by the NIH. So, there is a grassroots effort to stop this IOM effort entirely. Personally, while I like the CCC and would be happy with its adoption, I know our government is famous for a Not Invented Here bias. They want to develop stuff themselves even if it already exists. That's how we ended up with the ridiculous name Chronic Fatigue Syndrome from the CDC in the 80's, even though Europe had been calling this illness Myalgic Encephalomyelitis for decades. So, for me, I feel that it's a waste of my valuable, limited energy to protest an effort that is already under way.

So, here is a peek into some of the IOM controversy, from Jennie's blog. And if you want to catch up on the whole saga, here are all of Jennie's posts tagged IOM.

P2P Workshop
From what I've heard, this is the effort we should be most concerned with. The Pathways to Prevention (P2P) program is operated under NIH's Office for Disease Prevention, and the process began with a P2P Workshop for ME/CFS in January. The problem is that the process has been cloaked in secrecy and many aspects of it have not been open to the public. Here is Jennie's initial explanation of P2P. Unfortunately, it seems that things have gone from bad to worse.

The worst aspect of this process is that the P2P will develop recommendations on diagnosis, treatment, and research of ME/CFS with a panel of medical experts who know nothing about ME/CFS. Yes, you read that right. Stunning, isn't it? They've begun this process with a systematic evidence review of existing information, and in this recent post, Jennie breaks down the problems with the initial P2P protocol for the evidence review. Most disturbing of all is that this protocol looks like it will lump ME/CFS patients in with people with all sorts of undefined fatigue with no other symptoms required.

Whew. I told you there was a lot going on! There are lots of opportunities for moving forward in a positive way for ME/CFS patients...but also plenty of chances for things to go horribly wrong for us and for our patient community to end up worse off than we already are (if you can imagine that).

I am going to make a sincere effort to stay better informed and to keep you informed also. But I highly recommend following Occupy CFS for up-to-date information on all of these topics (and more). And I will especially try to let you know whenever there are opportunities for patients to get involved, submit comments, and make our voices heard. That's the good news in all of this - the patient community has made great strides and has never been better organized to make sure that we make the best of any opportunities for our input.

Friday, May 02, 2014

IACFS/ME Conference Science Summary

Back in March (how can it possibly be May already?), the annual International IACFS/ME Conference was held in San Francisco. I wasn't able to attend the conference, but I came across this wonderful summary that I wanted to share with you.

In this 51 minute video, Dr. Anthony Komaroff, a renowned ME/CFS specialist, summarized the main ideas from all of the biological research talks presented at the conference. It provides a great overview not only of the conference, but of the cutting-edge of ME/CFS science research right now. Even if you don't understand some of the technical points he covers here, I think you will find the scope and breadth of the research being done truly astonishing. There are many doctors dedicated to digging into the physiology of our crazy illness, and it gives me a lot of reasons to be hopeful for a better future for ME/CFS patients!

I've really fallen behind in keeping up with this sort of thing lately, so if anyone has any other resources or links to share from this conference or other sources, I'd love to hear about them.

Remember that you can now follow Learning to Live with ME/CFS on Twitter and on Facebook!