What is ME/CFS?

Did you ever see the movie "Groundhog Day"?

The 1993 comedy starred Bill Murray as a cocky weatherman who's sent to Punxsutawney, PA to cover the annual Groundhog Day event. On the way he gets caught in a blizzard and finds himself stuck in a time warp, repeating the same day over and over again.

Bill Murray and friend, in Groundhog Day, ©1993 Columbia Pictures

Well, living with ME/CFS* is like a hellish version of "Groundhog Day".

While a minority of patients feel better in the morning, the vast majority typically wake up feeling close to death. A hallmark symptom of ME/CFS is 'unrefreshing sleep', and 'unrefreshing' is an understatement.

But as the day goes on, we may gain tiny bits of energy, to the point where by the end of the day, at least when moderately ill, we may feel almost normal -- say 60-70% normal -- for maybe 2-3 hours. Not as much pain, neuropathy, muscle weakness, etc. Feeling like there's some hope. 

Then, just like in the film, it starts all over again. We wake up feeling like we ran 10 miles during the night on no fuel and got hit by a semi-truck at the end of the race -- i.e, feeling like we're dying, with absolutely none of the 'energy' before we went to bed. And this happens over and over again, every day, for years on end.

And if it gets really bad, then one can become bedridden, and often unable to tolerate any sound, light, and even touch, so that one's life truly becomes a living hell.

My friend Brian Vastag, a former reporter for the Washington Post, did a much better job describing what it's like to have ME/CFS in this article for the Atlantic 3 years ago.


From the Centers for Disease Control:

• While symptoms vary from person to person in number, type, and severity, all CFS patients are limited in what they can do to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), and similar chronic conditions.  
• CFS often affects patients in cycles: Patients will have periods of illness followed by periods of relative well-being. For some patients, symptoms may diminish or even go into complete remission;  however, they often recur at a later point in time. This pattern of remission and relapse makes CFS especially hard for patients to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, but this overexertion my actually contribute to a relapse.
• The percentage of patients who recover is unknown, but there is some evidence to indicate that patients benefit when accompanying conditions are identified and treated and when symptoms are managed. High-quality health care is important.

*ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The former represents the scientific name, while the latter a dismissive term coined in the 1980's before researchers realized the seriousness of the illness. ME/CFS is considered a transitional name between the two.

How You Can Help!

Specific Needs & Estimated Costs

Your donations will help cover things not covered by Medicaid, including:

Consistent, monthly doctor consults:
Dr. R's initial consultation fee: $210
w/twice-monthly (for 3 months), then monthly follow-ups: $90-180
Plus any prescribed tests, drugs or supplements not covered by Medicaid. 
One of the tests he finds very helpful is the Organic Acids Test ($299.00)

Supplements (from $8.19-$29.00) that are helping like:
B12 (Adenosylcobalamin/Hydroxycobalamin)
Co-Enzyme Q10
Branched-Chain Amino Acids
Folinic (not folic) acid
Niacin/Niacinamide
L-Carnitine
Pancreatin
Omega-3 DHA
Lactoferrin

And specific individual strains of high-dose probiotics based on test results.
(These are very important -- est. $150-200/month)
I'll write more about why in future posts.

Compounded Nystatin:  $40 for one week's course, x 8 weeks.

And because I live 100 feet from a highway, I need a medical-grade air purifier ($366.03) along with replacement filters ($167.60). I'll be writing a future post about how I accidentally discovered how much pollution and soot was coming into my apartment, complete with shocking pictures that you'll really have to see to believe. 

And since I've lost so much muscle in my feet, I really need a pair of good slippers with arch supports. This brand is a little pricey, but has great, great reviews on Amazon.


Note: If you'd like to have your donation applied towards a specific need* -- say for example, towards doctor visits and/or follow-ups -- or pay for an item or items directly, please feel free to let me know by filling out the 'Contact Form' on lower right-hand side of the blog.

Why is a Fundraiser needed?

Every single person with ME/CFS I know who has improved significantly, gone into remission, or even recovered, used an integrative approach to do so. This means that sometimes antibiotics or antivirals were helpful, but also certain vitamins and minerals or often specific strains of high-dose probiotics. In some cases it was also necessary to address environmental factors that may have impacted their health.

I've been on SSI and unable to work for the last twelve years because of my illness. This means my income is severely restricted and thus Medicaid is my only insurance option.

The problem is, 90% of the interventions above aren't covered by Medicaid. Plus, like most doctors, none of the ME/CFS specialists accept Medicaid, whether they're local or even at prestigious clinics like Stanford or the Open Medicine Institute.

That's why this Fundraiser is needed.

Fortunately the Daniel J. Becks Special Needs Trust was set up by a dear friend to specifically raise funds to help pay for appointments, medical tests, prescribed drugs and supplements, and medical equipment that isn't covered by Medicaid.

I have no access to these funds. They are paid out by a Trustee specifically for medical care and treatment as mentioned above and by law, they cannot be used for any other purpose.



How You Can Help!

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