2010 Invisible Illness Week Campaign

CFS & Fibromyalgia Is No Joke, But We’re Treated Like It Is

I have a lot of fun joking around with my co-workers and some of the people I work with like to comment repeatedly about the fact that I work such limited hours. I often hear:

• “It must be nice to only work one/two days a week”.
• “It must be nice to not have to work a regular job for a living”.
• “Why not get a real job like the rest of us?”

I always take it in stride and have fun, and make joking comments back and my favorite comeback is usually, “If you take my illnesses then I would gladly take your work schedule”.  No one wants to trade, however!  I had a conversation today with one person who said he has a “hard time” believing in the illnesses that I have.  He said everyone has “chronic fatigue” and when he was a kid there was no such thing as “fibromyalgia”.  People were just in pain.  He said that he was tired too when he left work. 

I tried to explain to him the difference between what the illness “Chronic Fatigue Syndrome” is and what normal fatigue is.  He still didn’t get it and probably never will.  I finally just said, “If you lived with me, you would believe it.”, and I walked away.  When someone says they have cancer, multiple sclerosis, or another disabling disease, no one questions it.  When we talk about our illness, it’s like we are constantly defending ourselves over and over again.  Then when I went on break I found myself feeling “less than” because once again someone doesn’t get it.

But then I had my own little pep talk:  I know who I am better than anyone.  These people I work with see me a few short hours a week.  They haven’t known me over the last 20 years.  I’m proud of myself for trying.  I work when I’m able to work, no matter how little it may be.  When I can’t, I can’t.  I think that ought to mean something.  None of these people saw me working 10 – 12 hours a day or longer, 6 and 7 days a week for years.  They have no clue what my life has been like, what I have been through and I don’t owe explanations to anyone. 

I know there are people I work with who see that I try and that I work hard even with the physical restrictions that I have.  But I’m through with the days of feeling like I have to prove that I can do it all even though I physically can’t.  I’m not taking that road again for anyone.  It’s not worth it.  My family needs me too much and I will not ruin myself to prove anything to anyone anymore.

CFS Moms Look Forward to Back to School Season!

As mothers, it is hard seeing our children off to elementary school for the first time when our children are 5 years old. These days, even though most children are in daycare part-time or full-time, starting elementary school is still a big step for them as well as for us.  For us mothers, it means that our children are growing up and that we aren’t needed as much as we once were and that is sad and can be scary also.   I remember crying for hours the first day of kindergarten, worrying about every little detail:  Did he make it to his class okay?  Did he get lost going from his class to the bathroom?  How in the world is he ever going to make it around that big school without me there to guide him?  I worried until I saw the bus pull up front at the end of the day that he was going to miss the bus.  But he stepped off the bus, I breathed a sigh of relief, and realized that he made it fine without me there holding his hand.

Once I got over my initial “breakdown”, I started to really enjoy having the house to myself during the day, especially during all of those awful CFS days where I needed to be alone to just be sick and try and sleep.  Then summer vacation would roll around and I would have to try and juggle keeping my son busy with my sleepless nights and CFS flares and I could barely make it most days.  I would end up locking myself in the bathroom, crying so that my son wouldn’t see me, because I was just so miserable.  I couldn’t keep up. 

Then I would be at the store or talking to other mothers and they would be talking about how they were enjoying their summer vacations with their kids and how they hated the thought of summer vacation ending.  I would feel like a rotten mother because I always dreaded the end of the school year and couldn’t wait for the summer to end.  On top of the guilt I felt for being so sick all of the time, I felt guilty for wanting my kid back in school so that I could get some rest. 

CFS not only robs us of the physical roles we need to play in life but it also robs us of any joy with our children and families.  It is our illness that wants the kids back in school – it isn’t us as mothers, because when we do feel well, we want the summer vacations to never end.  It’s the pain and the exhaustion that takes the joy out of taking a bike ride or a swim around the pool with our children – it’s not us as mothers. 

So if you’re a CFS mother reading this and you are feeling bad because you couldn’t wait for your children to get back to school, know that you’re not alone.  There are even a lot of healthy women out there who can’t wait for their kids to get back to school!  At least we have an excuse!

Dr. Jacob Teitelbaum’s Comments On Latest XMRV News

It was announced earlier this week that the NIH & the FDA have confirmed XMRV in ME/CFS and the media is buzzing with the news along with many CFS blogs.  I received an email today from the famous CFS & Fibromyalgia physician, Dr. Jacob Teitelbaum, with his latest blog post on the exciting information.  I wanted to share some of his thoughts with you.  As we all knew, including Dr. Teitelbaum, politics has always surrounded the lack of support that CFS has received over the years and was the main reason the just-released report from the NIH & FDA was held up for a while. 

To me, the fact that these reports were NOT released with proof of this XMRV information in ME/CFS reeks to high heaven.  Dr. Teitelbaum says in his blog post, XMRV Confirmed in CFS:

A well-done study out of the FDA and NIH has finally been published. Though the politics and controversy around the topic initially caused the study’s publication to be held up, and subjected to even more detailed scientific review and scrutiny, it was worth the wait.

The study showed that evidence of XMRV virus (and related viruses called “MLV”) was present in 86.5% of CFS patients vs. less than 7% of healthy controls. This is a dramatic difference and corroborates the WPI study. I was also very pleased to see that Dr. Anthony Komaroff was one of the study authors.

Why do I consider the presence of XMRV to be confirmed if there are conflicting studies?
1.The testing and science used in the study was excellent. When looking for a needle in a haystack, you need the right tools or you won’t find it. Not finding it doesn’t mean it’s not there.

2.The researchers were unrelated to the WPI researchers and had no financial ties. I consider the WPI folks to be excellent and motivated by the right reasons, but independent verification and confirmation still adds a lot.

3.That the healthy patients were mostly negative while CFS patients were largely positive confirms that the testing was not “too sensitive.” A second form of confirmatory testing was also done to confirm positive results.

This positive study distinguished people with CFS from healthy controls, was well done, and was conducted independently of any financial interests. That it reproduced the findings seen earlier in another well-done study is very convincing. Given this, other studies that found no XMRV in anyone suggests the researchers might need new eyeglasses.

Dr. Teitelbaum says that the finding of XMRV does not mean that XMRV causes ME/CFS.  He states, “ Because so many infections have been documented in CFS, it could simply be a reflection of an immune dysfunction, and not the cause.”

Dr. T. also says there are no proven treatments yet for XMRV, but that there are “many promising candidates”.  He says that they are risky and expensive and not that helpful at this point so he does not recommend that we be guinea pigs. 

CFS patients are wondering if they should be tested for XMRV.  Dr. Teitelbaum says that it depends. 

If the cost (about $650 last I checked) is not prohibitive, and you have family or doctors treating you like you’re nuts, it may be worth it. Also, if you are in litigation with an insurance company it may help (the insurance company will likely ignore it, but the judge may be more open to it.  Do the entire panel to avoid a false negative test. 

This news is just another confirmation that CFS is a REAL, PHYSICAL DISEASE.  We are not crazy, mental, hypochondriacs, or lazy.  We are truly sick.  Now even the government can’t deny it even though they tried to hide it! (That’s my opinion, anyhow.)

Dr. Teitelbaum’s thoughts on how this news helps us now:

This is one more potent confirmation that the illness is a real and physical disease. This has been obvious for a long time, but insurance companies and doctors could still be idiots and ignore the science. The media attention to this new study, and it being an NIH/FDA/Harvard study, will make it harder for nitwits to still make believe this is all in your mind. For perspective, doctors used to call Multiple Sclerosis “hysterical paralysis” and told women with lupus and rheumatoid arthritis that they were just hysterical — until new testing confirming the illnesses became available and changed everything.

Breaking News: NIH/FDA Study Reports XMRV Found In CFS Patients

Today at 3:00 p.m., the NIH finally released the information to the press that we have been waiting for – the publication of the article by the NIH, the FDA and Harvard Medical School researcher Harvey Alter.  The much-anticipated article reports evidence of murine leukemia virus-related viruses (MLV) in the blood of 32 of 37 CFS patients tested. XMRV is one of several variants of the MLV family of retroviruses, and the findings clearly support the WPI team’s Oct 2009 paper in Science, the researchers stated.

To read the full article by Harvey Alter, please click the link below.  This is a big day for ME/CFS research, hopefully. 

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

Updates On XMRV Controversy

I have been trying to keep up with all of the controversy surrounding the CFS XMRV research that has been going on since last October and it it weren’t for the CFIDS Association, I wouldn’t be able to make sense of any of it. If you haven’t already noticed, I am a huge supporter of this organization and I donate money monthly to them to try and help do my part for all of us suffering.  While I was catching up on some reading on their site tonight, I wanted to make sure I passed along the XMRV updates the CFIDS Association keeps on their website.  They have been following all of these studies very closely and feel like most of us patients that the subsequent studies that have been done are not sufficient to the first one. 

So here are some of the updates thanks to the CFIDS Association and from the president, Kim McCleary. 

• From the CEO’s Desk
• CFIDS Association XMRV Resources Page (Updated 8/17/10)

CFIDS Association September Webinars

The CFIDS Association has announced a couple of upcoming webinars you all might be interested in for September.  The first one is on Wednesday, September 1st, with Dr. Peter Rowe from Johns Hopkins University.  His webinar will be on “Managing Orthostatic Intolerance”.   The webinar will run from 12:00 p.m. – 1:30 p.m. EST.   Here is a little bit more about the webinar:

Orthostatic intolerance (OI) is an umbrella term for several conditions in which symptoms are made worse by upright posture. When a healthy individual stands up, gravity causes about 10 – 15 percent of her blood to settle in the abdomen or limbs. This pooling of blood means that less blood reaches the brain, resulting in a feeling of lightheadedness, seeing stars, darkening of vision or even fainting. For most of us, this lightheaded feeling is infrequent when we stand up because the body turns on a series of rapid reflex responses, including releasing epinephrine and norepinephrine, that return more blood to the heart and brain.

Dr. Peter Rowe was the first person to establish a substantial overlap between OI and CFS (although not everyone with OI suffers from CFS, and not everyone with CFS experiences OI). Join him for an informative presentation that details the various forms of OI, explores the condition’s relationship to CFS and offers tips and tricks to manage OI.

To register for this webinar, please click the link provided above. 

The next webinar provided by the CFIDS Association is on Thursday, September 16th, with Dr. Anthony Komaroff of Harvard Medical School.  His webinar will be on CFS & the Viral Connection and will also run from 12:00 p.m – 1:30 p.m. EST.  A little about this webinar:

Because some cases of chronic fatigue syndrome (CFS) begin with a flu-like infection, several viruses and other infectious agents have been studied as possible causes of CFS. Although none of them have yet been proven to cause CFS, several have been associated with CFS, and the development of CFS following infection with several infectious agents has been well documented.

Click the second link above to register for this webinar.

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