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A Patient's Perspective on Rich Carson's ME/CFS Research Funding Appeal

  [ 21 votes ]   [ 7 Comments ]
www.ProHealth.com • October 24, 2012


How can research funding be generated so that the very ill and financially depleted ME/CFS patients do not have to pay for it themselves?

Following is one patient’s response to a recent letter from ProHealth founder Rich Carson & Patient Advocate Courtney Miller (You Can Make a Difference) asking for ME/CFS patient contributions to help fund the Simmaron Foundation’s flagship NK cell dysfunction study.

________________________________

To Rich Carson and Courtney Miller:

I've been thinking of this request and have finally realized why it offended me.

I'm wondering how many cancer patients have been asked to donate their own money to cure themselves and others. I doubt many, if any.

Seems like the cancer ‘industry’ focuses on public awareness and fundraisers instead of asking the ill to basically pay to heal themselves. There's already a big burden on Fibro/ME/CFS patients to do this themselves.

Insurance doesn't pay for many of our required or desired medical care/treatments; or for the practical aspect of our daily physical needs. For example:

• Insurance doesn't pay for someone to clean our houses, or do our grocery shopping / cooking / cleaning - these all come out of our own pockets.

• As do ‘experimental’ (aka, non-FDA approved treatments, which have been acceptable in many other countries for many years).

• Insurance companies also do not cover massages, and some not even chiropractic, or only minimal chiropractic visits.

• Additionally, insurance doesn't cover the multitude of supplements that we should all be taking - or at least trying - according to many doctors specializing in Fibro/ME/CFS and your website, among others who focus on the Fibro patients.

May 12th is National Awareness Day. But I first heard of it last year, on the day, so I couldn't really do much in the way of advising my doctors, chiropractic, massage therapist, etc. so they could make all of their patients aware through bracelets, informational signs, etc.

• Where are our fundraising ‘walks,’ and other fundraising events to help us and make others aware of our plight?

• What is our ‘color’? [And is this generally recognized?]

• Why do we get ‘a day’ and not a full month, like many cancers?

• Where are our commercials (not pharmaceutical - which commercials are basically un-informative, incorrect and aggravating)?

With all of the out-of-pocket costs Fibro/ME/CFS patients incur to basically treat themselves and get the necessary domestic assistance, how can we also fund our own research?

• I know I don't have any money left at the end of the month, and am foregoing many of the treatments / care / assistance / supplements I would like to be taking advantage of.

• I know I pay thousands and thousands of dollars per year to take care of myself and try to heal myself, or to pay health care professionals.

My income is limited to SS and an annuity from my Worker's Comp claim years ago. Luckily for me, my husband is gainfully employed, but many of us are not so lucky. A great number probably don't even get the income that I, personally, receive. I've been lucky and blessed, but I still can't afford to pay the bill for research.

I would challenge you and your staff to research how to get the word out to the general public (not just the government and patients - though that's good), and seek out fundraising opportunities, assistance and the like.

I spend much time researching ways to help myself; I can't also spend time researching how to get this accomplished.

I appreciate you hearing me out. I know your company helps fund research and that is greatly appreciated, as well as the e-mails providing helpful, up-to-date information.

I'm forwarding a website I found concerning the Fibromyalgia Awareness Day, which gives info on how to participate in / organize a fundraising walk, and perhaps other fundraising opportunities.

Thank you - L



Please Discuss This Article:   Post a Comment 

Fundraising - If Not Us, Who?
Posted by: jacquief
Oct 24, 2012
I have been sick with ME for 23 years. Yes, I have paid a lot to try and live a normal life. But I am a little offended by this person's perspective. Do cancer patients get subsidized help cleaning their homes? Do lupus patients get their supplements paid for? Do people waiting for transplants get more medical coverage than I do? When my bother was dying from scleraderma, he was denied coverage for a lung transplant from his insurance company. He fought it and they eventually agreed to cover it. HE fought it. Not some organization or friends or family. HE fought it.

My friends struggling with cancer DO contribute to cancer research. My friend waiting for a new kidney DOES contribute to Kidney research. If you want to organize a walk to raise funds, do it. You want to raise awareness, do it.

Being sick stinks - for anyone. Yes, many illnesses get more awareness, but isn't that our job? It should be us and our families and friends that do this. I know I contribute to those charities that affect me and my loved ones. How is our illness any different than any other? Breast cancer patients learned to organize and have done a marvelous job at it. We need to learn from them not hold them in comtempt!

Reply Reply

 
If Not Us, Who?
Posted by: spiketheartist
Oct 24, 2012
There are literally millions of dollars raised for breast cancer research, most of it not from breast cancer sufferers. I don't know if Cancer Care is still around, but years ago they did provide things like household help at little or no help. Why can't we get that kind of financial support? We can't get out there and organize like the breast cancer people did because we're too tired to do more than sit up in bed half the time!

And it wasn't just the breast cancer sufferers who focused public attention on it. At this point, how many lives does breast cancer alter to the point of near-destruction? With pinpoint surgery and chemo helping so many women, a lot fewer, I would guess, than are devastatingly affected by CFS. Yet they get hundreds of times more research money than we do.

But maybe you are right in that we should study the strategy by which they leaped into the forefront of medical spending. We are still not taken seriously by the U.S. government or any of the huge grantmakers, and I don't understand why, except that we don't have the energy to make ourselves heard.

There was a much-ballyhooed teleconference recently where people with CFS could ask questions of some major U.S. health official (brain fog, so I forget who) who was trying to show she was deeply concerned about CFS/ME. All the people with CFS expressed fawning gratitude to her that they were listened to. But I read the transcript and thought, this is BS. She did not do her homework and learn anything about the disease beforehand. She did not promise anything.

In a comparison, she referred to a disease that affects about 300 Americans total (I do remember numbers somewhat) as if it deserved the same attention as CFS/ME and FM, which affect several million. We still haven't gotten the message across that CFS etc. can destroy lives. We still haven't conveyed what fatigue in the context of CFS means.

People point to all the good things I've gotten from my change in lifestyle, and I say, "How good did you feel about getting the booby prize when you were a kid and came in last in a contest? That's how I feel." We dan't do raise the money ourselves and I don't know how to get the rest of the world to care.

 


CFS/ME patients are a LOT different
Posted by: BeckieC
Oct 26, 2012
I suffer GWI, and I am offended for being placed on an even playing field with ANY other disease. CFS is the only disease I know of that cannot be blamed on poor diet and lack of exercise. Almost 100% of CFS, GWI, CFIDS cases are caused by viral infection that never cured.
For one thing, cancer, lupus and MS never had their millions in research funding fraudulently misappropriated to cancer, which is already heavily funded by Congressional allocations. Congress has never allocated anything to "undiagnosed" syndromes that put millions of Americans out of work each year.
Because they can detect their illnesses through one specific blood test or a medical procedure, their illnesses are recognized. CFS was not recognized by SSD until long after Fibromyalgia, which is not always debilitating. For the first time in my life and my legal career, I was forced to hire attorneys to force SSD benefits. Whenever an Affirmative Action hire SS reviewer sees CFS on an application, they automatically reject application. All applications are rejected at least 5 times by unwritten policy. I don't see that or hear that in cancer, lupus or MS.
For another thing, upon diagnosis with CFS, GWI or CFIDS, patients lose family and spousal support. Families usually decide their CFS patient is faking, even after 30 years of relatively good health, and healthy diet, exercise. Spouses are usually male, who want to be taken care of, cooked for, cleaned up after. Most male spouses of CFS patients will stop doing any chores at all, merely because their wives grew too ill to nag, like mothers that they secretly want instead of any wife at all.
I have never seen a cancer, Lupus or MS patient completely abandoned, kicked to the curb, deemed mentally ill, full of self-pity, or lazy, gold-bricking. I have never heard of an employer telling a cancer, Lupus or MS patient that they are cowards, so they can't continue in leadership employee positions.
For another thing, cancer patients in particular, experience periods of recovery, normal energy, regular lives, regular food, regular exercise, regular social lives. Once a CFS, GWI, CFIDS patient is struck down, nothing ever returns to normal. Finding something to eat that doesn't make CFS patient bedfast, or tied to the bathroom, toilet and puke bucket is something a cancer patient only endures for chemo. There is no chemo, no recovery, no stabilization, no predicting, no setting schedules, no ability to control CFS, GWI or CFIDS at all.
I have never heard of any other disease that lives with the patient. The patient doesn't live with the illness. The illness of CFS takes over every single aspect of life and death. You cannot tell me there is any other disease that so impacts and derails the patient, livelihood, lifestyle, lack of quality of life.
Even when compared to AIDS, Dr. Nancy Klimas agreed she would much rather treat the AIDS patient than CFS because treatment varies from patient to patient because of the pain and suffering element. And AIDS patient can live symptom-free, pain-free, absolutely free for as many years as the patient so desires. Never will you be able to say the same for a CFS, GWI or CFIDS patient.
And last of all, nobody cares about CFS until it is happening to them personally. I can't tell you how many times I have tried to tell these new soldiers coming home that they need to get their final affairs and financials in order, becasue they have only 5 years left to work. They need to earn as much, work as much, save as much, and plan ahead as much as they possibly can. I know that I did, because I planned on whipping this disease. As it turns out, the disease, SS, VA, federal employer and all private employers, plus family and spouse beat the Hell out of me. I have no friends.
Reply Reply

 
listen to me
Posted by: lochner
Oct 27, 2012

Listen to me. 80% of CFS is caused by a parasite/worm C. pulmoni, also called Klapowi.
This worm/parasite switched from animal to human in VietNam when we bombed the
hell out of that country. It came to the US with returning vets.

This worm/parasite is in the nematodes group. There is a new book out that details the
switch of parasites from animals to humans. It was reviewed in the New York Times last
week. It is called Spillover, I believe. This is not some crazy thing I am making up. It
is something that is happening all around us.

I was dx with Chronic Fatigue Syndrome about twenty years ago. I realized I have this
parasite about a year ago. I am treating it with ultraviolet light blood treatment and
vit c IV. The worms are dying off. However, the larvae is in a sheath and has a built in
survival rate that drags things out.

Do not dispair. Understand there is no test to locate this worm. It needs to be tacked down
by some treatment that goes through the blood as it is described as 'hidden lung worm', and
not in the gut as so many stupid doctors believe.

Barbara Lochner

 


Been on both sides
Posted by: Taliba
Oct 28, 2012
Having had both cancer and ME/CFS I have to agree that the ME/CFS has been far, far worse than anything that cancer ever put me through.

As a cancer patient there are many, many resources available to you. Cancer has been recognized as a scourge and garnered sympathy for over a hundred years. The response that you get from others is also completely different. Strangers will offer to help and support you. Never did I receive the scorn, contempt and abandonment as a cancer patient than I do now as someone suffering from ME/CFS.

Everything that was stated about barely getting by on ME/CFS is absolutely true. However I wouldn't say that getting a request to contribute to a cause when I have virtually no supports from my community offends me, so much as it saddens and frustrates me.

Not having a diagnostic tool and a way to hold those who have failed us accountable does set us apart. Do others who are sick get screwed too? Of course. I do not believe that they get decimated and robbed at the same scale. Not even close.

My life improved only when I found a spouse who was willing to look after me, and after I cut my ignorant and abusive family out of my life.

What offends me is that we are pitted against each other at all due to the scarcity of resources and the ignorant and egotistical approach to fighting disease of the pharmaceutical industry. Applying capitalism to fighting disease makes beggars out of all of us. So I don't blame anyone for asking me to pay for my own research, simply because I know that no one else will. But it is wrong that we have to do so.
Reply Reply

A Patient's Perspective on Rich Carson's ME/CFS Research Funding Appeal
Posted by: merleyroy
Nov 11, 2012
I actually agree with most of what "L" said, because there is no doubt in my mind that we are the cinderella disease of the lot. Whilst I do not begrudge cancer charities the money they receive (I had a brother who died of prostate cancer), they have a huge profile compared to ourselves and thousands of people who have never had cancer make donations. I
Severe illness like ME or cancer can make it very difficult or impossible for sufferes to organise and/or take part in fundraising. However, although many of us are sorely strapped for cash to donate to charities working to help us, I am not offended to be asked, because we need to find funds wherever we can and some sufferers ARE in a position to do so.
In fact I personally, can contribute a small sum and have tried a number of times, trouble is, the allocated online donation handlers "Network for Good" might as well be "Network for nothing"! First their Address Verification System (AVS) rejected my credit card, stating a zip code mismatch. I contacted my bank who verified that all my attempts (numbering 12) had been authorised at their end, which fact I emailed to N for G. This email was replied to but the contents ignored, stating that if the problem is at your bank's end they can't sanction! I replied again reiterating my bank had authorised, so the fault must lie with their AVS. I didn't receive a further reply (probably because I had a little rant (though i didn't swear). They had offered an alternative way to bypass the zip code verification however, which involved logging on to their site, using a usa state and zip code (I am from the uk)and donating via paypal. But then, no matter what I tried, their search for the charity (Simmaron Research Foundation) failed.
So back to square one! I can't believe I am the only one having this problem, so this charity and others could be losing a lot of money by using this go-between with their flawed AVS.
Reply Reply

Wanted to Donate, but not ALLOWED to!
Posted by: merleyroy
Nov 13, 2012
I actually agree with most of what "L" said, because there is no doubt in my mind that we are the cinderella disease of the lot. Whilst I do not begrudge cancer charities the money they receive (I had a brother who died of prostate cancer), they have a huge profile compared to ourselves and thousands of people who have never had cancer make donations.
Severe illness like ME or cancer can make it very difficult or impossible for sufferes to organise and/or take part in fundraising. However, although many of us are sorely strapped for cash to donate to charities working to help us, I am not offended to be asked, because we need to find funds wherever we can and some sufferers ARE in a position to do so.
In fact I personally, can contribute a small sum and have tried a number of times, trouble is, the allocated online donation handlers "Network for Good" might as well be "Network for nothing"! First their Address Verification System (AVS) rejected my credit card, stating a zip code mismatch. I contacted my bank who verified that all my attempts (numbering 12) had been authorised at their end, which fact I emailed to N for G. This email was replied to but the contents ignored, stating that if the problem is at your bank's end they can't sanction! I replied again reiterating my bank had authorised, so the fault must lie with their AVS. I didn't receive a further reply (probably because I had a little rant (though i didn't swear). They had offered an alternative way to bypass the zip code verification however, which involved logging on to their site, using a usa state and zip code (I am from the uk)and donating via paypal. But then, no matter what I tried, their search for the charity (Simmaron Research Foundation) failed.
So back to square one! I can't believe I am the only one having this problem, so this charity and others could be losing a lot of money by using this go-between with their flawed AVS.

P.S. Sorry to have posted this twice, but did not previously enter the appropriate subject heading.
Reply Reply


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