Coping with Chronic Illness

MS, PHN, CFS/ME/CFIDS
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Note: I am not a medical professional. The contents of this blog are my opinions and experiences. Always consult your doctor before making any health decisions, and always educate yourself about your conditions and their treatments.

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Myalgic Encephalomyelitis

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Educate your physicians about ME/CFS/CFIDS

via ME/CFS Worldwide Patient Alliance

Starting March 1, ME/CFS patients are educating physicians around the world of  retrovirus discoveries (XMRV) as well as other biological abnormalities found with this disease. With medical schools and government agencies not fulfilling this role, like so many other matters, patients are doing it themselves.

The campaign will last until March 15. Each patient is sending five letters and scientific documents to five physicians in their local area.

These include:

  • National Institutes of Health announcement of their retrovirus findings.
  • Press release announcing unique proteins are found in spinal fluid of ME/CFS patients.
  • National Cancer Institute announcement of the original study, with Whittemore Peterson Institute and Cleveland Clinic, that showed high level of retrovirus in ME/CFS patients.
  • List of top ten biological discoveries in ME/CFS patients, according to Dr. Anthony Komaroff, a professor at Harvard Medical School.

The campaign was organized by PANDORA and CFS Solutions of West Michigan. In January 2011, MCWPA did a patient survey and participating in this project was in the top three choices.  Patients were given suggestions and instructions in the Patient Discussion board.

PDF files are attached for your convenience.

Click here to download:
Viruses-Found-in-Chronic-Fatigue-Syndrome-Patients.pdf (38 KB)
(download)
Click here to download:
062004.pdf (156 KB)
(download)
Click here to download:
Retroviral-Link-to-Chronic-Fatigue-Syndrome-National-Cancer-Institute.pdf (147 KB)
(download)
Click here to download:
Spinal-fluid-proteins-distinguish-lyme-disease-from-chronic-fatigue-syndrome.pdf (21 KB)
(download)

Filed under  //  CFIDS   CFIDS/CFS/ME   CFS   ME   Myalgic Encephalomyelitis   Myalgic Encephalopathy   chronic fatigue syndrome   lumbar puncture  
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Have CFIDS/ME? Don't donate blood.

At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS. (American Red Cross Statement 12/03/2010) (emphasis mine)

This is a good thing, but it comes with a tremendous amount of frustration. If CFIDS/ME is all in our heads or we're just tired then why can't we donate blood? And if we might have a retrovirus that can be passed along in our blood then why is our illness dismissed?

Filed under  //  CFIDS   CFIDS/CFS/ME   CFS   ME   Myalgic Encephalomyelitis   Myalgic Encephalopathy   awareness  
Posted
 

CFS/CFIDS: 10 Things People Misunderstand About This Fatigue

  1. This Fatigue is not the same as tired.
  2. This Fatigue is not the same as lack of energy.
  3. This Fatigue is not the same as sleepy.
  4. This Fatigue is not the same as depressed.
  5. This Fatigue is not the same as exhausted.
  6. This Fatigue is not the same as lethargic.
  7. This Fatigue is not the same as unmotivated.
  8. This Fatigue is not the same as ... fatigued.
  9. This Fatigue does not pass after a few days' rest.
  10. This Fatigue is the stuff of night terrors where you're trying to wake up and save yourself, but you can't.

[Read the full post here.]

I'm not tired, I'm ill. I have a disabling illness that affects many of my body's systems. Alongside the debilitating fatigue I have various physical symptoms including chronic pain and extreme susceptibility to illness and infection and neurological ailments that include cognitive difficulties. And right now, there's no cure.

Filed under  //  CFIDS   CFIDS/CFS/ME   CFS   ME   Myalgic Encephalomyelitis   Myalgic Encephalopathy   awareness  
Posted
 

CFIDS/CFS/ME & Blood Donation

On June 18, 2010, the American Association of Blood Banking (AABB) issued a Bulletin requesting that CFIDS/ME patients be actively discouraged from donating blood because of the "risk of transmission of XMRV" (Xenotropic Murine-Related Virus). [AABB Press Release]

A few years ago (okay, a decade, I'm aging, time blurs) I had some sort of wacky platelet disorder and couldn't donate blood because of it. Then there was the tattoo. And now there's this, something I wouldn't have known if a friend with CFIDS/CFS/ME didn't tell me. I guess there's a lot to learn about this illness.

Filed under  //  CFIDS   CFIDS/CFS/ME   CFS   ME   Myalgic Encephalomyelitis   Myalgic Encephalopathy  
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