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ME/CFS – Are Genetics a Variable?

1/21/2020

2 Comments

 
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Sometimes realizations ooze quietly into your life and you need to look behind you to actually see them.  Sometimes they arrive via a lightning bolt epiphany.  My latest was the latter.  Over the holidays, my mother visited and we enjoyed many family conversations but the trigger came when she looked at a picture on my desk of her mother (my grandmother).  She hesitated, then asked, “Was that taken before or after she was sick?”  It took my brain cells a moment or two to remember that my grandmother had been sick for many years long before I was born.  She struggled to recover from either malaria or typhoid (my mom wasn’t sure which as she was a little girl at the time.)  “She was in an infirmary for many years because she was so tired and couldn’t handle the family and all the farm work”, my mom continued.  Click.  I then asked, “Mom, weren’t you sick for a long time after your last baby was born?”  “Oh yes, I just couldn’t get my strength back.  I was so tired all the time.  It took a couple years before I got strong again.”  I was the little girl at that time.  Click.  Click.  Click.
 
With a background in the scientific method, I’ve never been one to make gross assumptions based on anecdotal evidence.  During my struggle with ME/CFS, we poured over the published literature looking for clues to my illness and trends in the epidemiological write ups of mass illnesses (there was virtually no research to be found specifically on ME/CFS).  One piece that stuck with us was a gut certainty (now that’s scientific) that genetics had to be part of the puzzle.  Not the whole, but a variable in why my illness progressed as it did when others around me recovered and went back to their normal lives.
 
And as those Clicks got louder, the image of the other sick woman with the swollen belly and dark raccoon eyes in the doctor’s waiting room came back to me.  Our onset and illnesses were mirror images.  So once again, this certainty of a genetic component clicked into place.  This time it had three generations of anecdotes but still no scientific data.

 
Do you have any gut anecdotal feeling about the underlying causes of your version of ME/CFS?  Since it’s a wastebasket diagnosis, we could all be right.  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha


2 Comments

ME/CFS Symptoms – Consider Food Allergies/Sensitivities

2/26/2019

2 Comments

 
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Although most ME/CFS patients share a core group of symptoms, many have additional symptoms that add to the complexity of treatment and healing.  Depending on how long ago you were diagnosed with ME/CFS and how thoroughly you were tested, you may or may not have explored food allergies or intolerances.  There are in fact some patients who have been diagnosed with ME/CFS who are actually suffering from food and/or environmental allergies.

Recently I was reading about Gluten intolerance and I was surprised at the overlap of symptoms with the standard definition of ME/CFS – Fatigue, feeling rundown like you have the flu, joint pain or numbness in extremities, ‘foggy mind’ where concentration is difficult, headaches, prolonged changes in mental health and gastrointestinal discomfort.  It seems that when our bodies are immunocompromised, the symptoms are similar no matter what the cause.  According to a recent article ‘Adult-Onset Food Allergies Increasing, Confusing’ on WebMD, about one in 10 adults have a food allergy with half of these starting well into adulthood.


Could you be struggling with a new food allergy?  Could a food or environmental allergy/sensitivity be complicating your recovery?  Consider this as part of your continuing ‘case study of one’ as you work to understand your version of ME/CFS.  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.
Be Well Again,
Martha

2 Comments

Immune Support – Who Do We Listen To?

5/29/2018

2 Comments

 
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Most ME/CFS patients would agree that supporting our immune system is key to a successful path back to health.  We recognize that this system is a 24/7 work horse that never rests.  The majority of challenges to our person health that we encounter go undetected by us due to the vigilance and vigor of our efficient immune systems.  And some researchers support the theory that part of the ME/CFS struggle is due to a compromised or ‘on tilt’ immune system.
 
So what should ME/CFS patients do to support our immune systems?  From my perspective, it’s hard to find definitive information unless it’s followed by an ad for the recommended product.  At one extreme are the recognized research groups who won’t commit to anything specific.  At the other extreme are the passionate semi-scientific articles extolling the virtues of a ‘total solution’ product.  ME/CFS patients find it difficult to sift thru all of this when so much is at stake and brain fog is dulling one’s judgments.

Here's a link to an article from Harvard Law School “How to Boost Your Immune System.”  It’s couched but ultimately informative.  And it gets us into the supplement discussion again.


For me, eating healthy food loaded with nutrients and getting REM sleep were the highest priority in my efforts to support my immune system as I was working to defeat CFS.  What are your strategies?  Have you found a combination of things that add up to a healthier immune system?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again, 
Martha

2 Comments

ME/CFS – Are Genetics a Variable?

1/23/2018

0 Comments

 
Picture
Sometimes realizations ooze quietly into your life and you need to look behind you to actually see them.  Sometimes they arrive via a lightning bolt epiphany.  My latest was the latter.  Over the holidays, my mother visited and we enjoyed many family conversations but the trigger came when she looked at a picture on my desk of her mother (my grandmother).  She hesitated, then asked, “Was that taken before or after she was sick?”  It took my brain cells a moment or two to remember that my grandmother had been sick for many years long before I was born.  She struggled to recover from either malaria or typhoid (my mom wasn’t sure which as she was a little girl at the time.)  “She was in an infirmary for many years because she was so tired and couldn’t handle the family and all the farm work”, my mom continued.  Click.  I then asked, “Mom, weren’t you sick for a long time after your last baby was born?”  “Oh yes, I just couldn’t get my strength back.  I was so tired all the time.  It took a couple years before I got strong again.”  I was the little girl at that time.  Click.  Click.  Click.
 
With a background in the scientific method, I’ve never been one to make gross assumptions based on anecdotal evidence.  During my struggle with ME/CFS, we poured over the published literature looking for clues to my illness and trends in the epidemiological write ups of mass illnesses (there was virtually no research to be found specifically on ME/CFS).  One piece that stuck with us was a gut certainty (now that’s scientific) that genetics had to be part of the puzzle.  Not the whole, but a variable in why my illness progressed as it did when others around me recovered and went back to their normal lives.
 
And as those Clicks got louder, the image of the other sick woman with the swollen belly and dark raccoon eyes in the doctor’s waiting room came back to me.  Our onset and illnesses were mirror images.  So once again, this certainty of a genetic component clicked into place.  This time it had three generations of anecdotes but still no scientific data.

 
Do you have any gut anecdotal feeling about the underlying causes of your version of ME/CFS?  Since it’s a wastebasket diagnosis, we could all be right.  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha


0 Comments

ME/CFS Common Ground – Not What Divides Us

10/24/2017

0 Comments

 
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Our political discourse these days seems to have devolved into a contentious ‘Us and Them’ battle.  Anything, no matter how insignificant, that could possibly make the ‘other guys’ look bad becomes fodder for the media to ramp up and exploit for days and weeks.  Meanwhile, nothing is getting done.  No matter what your political view point, this nasty gridlock is frustrating.  I recently read about a ridiculous series of political volleys and it got me thinking about how I sometimes see this same illogic in the ME/CFS medical field.
 
As patients struggling with ME/CFS day after week after month after year, we are always hopeful that a significant new medical or research break through will be the answer that liberates us from this cruel disease.  And I can only imagine how hopeful researchers and medical practitioners can be that they are onto a solution or an effective treatment that will be ‘the silver bullet’.  They can seem just as certain that they have the answer and honestly, sometimes severely critical of other ideas being wrong.  With resources and money scarce in this economy, it can start to sound a bit like our political discourse.  But realistically, we all know that ME/CFS is a waste basket diagnosis.  There are many versions of ME/CFS lumped in together.  They could all be onto the key to different diseases that could be culled out of the waste basket.

 
In the meantime, as patients, we need to focus on our common ground and support each other as we struggle to get well.  Work to understand our own versions of this cruel disease, follow the clues of our patterns and carefully pace, pace and pace.  Have you found any ‘common ground’ strategies to share?  Please COMMENT or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,
Martha

0 Comments

ME/CFS/SEID Personalities – The Research

5/24/2016

2 Comments

 
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The question is often raised about personalities and ME/CFS/SEID.  Do we have traits in common that are part of the ‘syndrome’?  We’ve all heard that ME/CFS/SEID patients are usually Type A personalities defined as competitive, impatient, driven and stressed.  For many, the anecdotal evidence supports this association.  I’m a classic example of a Type A.  And you’ll find blogs, articles and endless fodder on the internet attesting to this viewpoint.  But does the research support such a link?

I found three studies that examined the personalities of ME/CFS/SEID patients – let us know if you have found others.

The first, “Personality and Perfectionism in CFS” confirms a personality link.  http://www.tandfonline.com/doi/abs/10.1080/08870440802403863#.U02NwtfD-po

The second, “Chronic Fatigue Syndrome and DSM-IV Personality Disorders” concludes that there is no link.   http://www.ncbi.nlm.nih.gov/pubmed/19073288

The third, “Personality Features and Personality Disorders in CFS”, offers a ‘maybe or maybe not’ association.   http://www.ncbi.nlm.nih.gov/pubmed/20664306

Not addressing the flaws in the research, that’s a solid ‘don’t know’.  As ME/CFS/SEID patients, we’ve gotten used to the ‘don’t know’ territory.  Our diagnosis is a question mark.  The causality is a question mark.  The treatment is a question mark.  And, of course, our personality’s part in contributing to our dis-ease is a question mark.  Status Quo.

But hard data or not, for me, the path to recovery required that I change my personality.  Being a type A and recovering from ME/CFS/SEID didn’t mix.  I had to not only slow down my body, I had to slow down my psyche.  This required focused retraining.  How are you dealing with personality and your struggle with ME/CFS/SEID?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.
​
Be Well Again,
Martha

2 Comments

SEIDS/CFS Research – Biological Markers Data Beginning to Emerge

3/3/2015

6 Comments

 
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SEIDS/CFS seems to be on a media roll lately.  Now a research study at Columbia University’s School of Public Health has reported the results of a robust study with a sampling of 298 ME/CFS patients and 348 healthy controls.  For the non-scientist, they have identified specific compromised immune system markers that were present in SEIDS/CFS patients during the first two to three years of the illness.  These same markers were not present in the controls or in patients who had been sick longer than three years.

The following are quotes from a Press Release put out by the school:

“We now have evidence confirming what millions of people with this disease already know, that ME/CFS isn't psychological,” states lead author Mady Hornig, MD.

“This study delivers what has eluded us for so long: unequivocal evidence of immunological dysfunction in ME/CFS and diagnostic biomarkers for disease,” says Dr. Lipkin, senior author of the current study.

“The study supports the idea that ME/CFS may reflect an infectious “hit-and-run” event. Patients often report getting sick, sometimes from something as common as infectious mononucleosis (Epstein-Barr virus), and never fully recover. The new research suggests that these infections throw a wrench in the immune system’s ability to quiet itself after the acute infection, to return to a homeostatic balance; the immune response becomes like a car stuck in high gear.”


Here’s a link to the complete text of the Press Release:  http://www.mailman.columbia.edu/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological-illness

I don’t want to get too excited but this is substantial.  Early stage SEIDS/CFS patients have the markers.  Controls don’t.  No percentages.  No ratios.  No hedging.  No gray area.  Positive and Negative results only.  Call me crazy – oh wait, no one will call us crazy anymore! – but I think we’re on our way to some important breakthroughs.  Yeah, I know, I’m an incurable optimist!  Please COMMENT or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,


Martha

6 Comments

ME/CFS Gets New Name – Official Recognition

2/10/2015

8 Comments

 
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From time to time, ME/CFS has been discussed in the mainstream media.  Usually there’s a flurry of reporting, an interview or two, maybe even a national nightly news segment and then a lot of silence.  We could be in for a repeat of the past but maybe not this time.

The Institute of Medicine – at the request of an impressive number of Federal agencies including the Department of Health and Human Services, NIH, the Agency for Healthcare Research and Quality, the CDC, the FDA and the Social Security Administration -  has convened an expert committee to examine the evidence base for ME/CFS.  Their conclusion?  ME/CFS is a real physical disease.  Should we applaud or just do an en masse exaggerated eye roll?

To their credit, they have determined that physicians should be taking ME/CFS seriously and that a new designated diagnosis is required to separate ME/CFS from its former reputation as an imaginary or psychological illness.  The new name is Systemic Exertion Intolerance Disease (SEID).  OK it doesn’t exactly roll off your tongue but it is a disease not a syndrome.  Score one for us.


Here is a link to the official report   http://www.iom.edu/Reports/2015/ME-CFS.aspx

Here is a link to a report on NBC’s website   http://www.today.com/health/chronic-fatigue-syndrome-real-dont-call-it-panel-says-2D80484902

So what does this mean for those who are suffering with SEID?  Maybe this could be the beginning of serious dollars being dedicated for research.  Maybe some treatment protocols will be developed that have some basis in actual case histories.  And just maybe patients who are suffering with SEID will be greeted by physicians with understanding and a commitment to get them well again without referring them to a psychiatrist.  Please COMMENT or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,


Martha


8 Comments

ME/CFS Research – Are we Getting Closer to a Diagnostic Test?

11/4/2014

4 Comments

 
PictureMichael Zeineh / Stanford University
For those of us who have been suffering with ME/CFS for years if not decades, we know that it’s a real physical disease.  Even though most practitioners have told us that ‘it’s all in your head’, we’ve known that someday the research would finally catch up with the cruel reality of ME/CFS.  Now, a research team out of Stanford, using new brain scan technology, has reported finding significant differences between healthy people and those who are suffering with ME/CFS.  It was reported in many news outlets.  Here is the link to a write up in Today.  Read it if you haven’t seen it already.

http://www.today.com/health/chronic-fatigue-real-new-brain-scans-show-1D80250083

Reading this article cheered me up!  OK, I’m an optimist at heart and I’m ready to go there.  But not only did this study receive attention, mainstream audiences heard about it.  That means that the negative viewpoint of ME/CFS might start to change.   And, the researchers found inflammation in brain nerve cells which could possibly have been triggered by a viral infection.  Duh!  For decades, many ME/CFS sufferers have said that they caught a flu that they never recovered from.

Of course, this study needs to be repeated and it will take time to gather more data.  But for now, it’s exciting to think that we could be getting closer to not only understanding the underlying cause of ME/CFS but possibly a successful treatment.  OK, I said I was an optimist.  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

4 Comments

ME/CFS Depression – What Makes It Different?

8/5/2014

7 Comments

 
Picture© 2014 TSM
Donna’s comment about depression on the 3/25/14 blog – ‘ME/CFS Double Life – Two Identities’ – got me thinking.  Her comment was, “Recently, I read somewhere that the difference between ME/CFS and depression is that
ME/CFS sufferers can list many things that they would like to do if well enough,
but those that suffer with depression cannot.”  When I recently heard someone make a dismissive comment about a ME/CFS sufferer who was depressed, adding in air quotes around the word, Donna’s comment resurfaced in my mind.

Most people understand that depression is a real disease. And if it’s prolonged, there is often a physical cause for the imbalance that triggers and sustains it. 
But what is different when we compare the diagnosis of depression  with ME/CFS and depression?  On an NIH website I found a paper titled “A Systematic Review of Chronic Fatigue Syndrome: Don't Assume It's Depression.”  Here’s the link for the full text.  The following Table was attached to the article.  I found it enlightening and worth sharing.

 

Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission. 
 You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha


Table 2.
Comparison Between Chronic Fatigue Syndrome (CFS) and Depression Across Different Studies
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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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