The Letter I wrote for the writing campaign on CFS/CDC Zero Dollars

JennyJenny

Well-Known Member
Here is the letter I wrote. A bit off the cuff and not terribly professional but here it is. It went to all the e-mail addresses given to us in Cort's blog. I did forget to mention SEID and the IOM report but the Senator does address it in his response.

The Appropriations Committee were like, great, lets use the excuse of a handful of ME patients not liking the CFS structure to wipe a grossly misnamed and bothersome disease off the books. Never mind that we cannot get a disease and its framework implemented again because the amount of money to do that will not be spent. Now, we CFS patients don’t have ANY disease, we are not recognized at all.

I guess we just forget all the breakthroughs using Fukuda in the hands of researchers that know how to diagnose with it. Which by the way, ME patients are also diagnosed using it. (Dr. Montoya's brain scans, Dr. Klimas working on PEM and pediatric CFS patients on her studies, Drs. Lipkin and Hornig with Cytokines.)

I believe CFS and ME are the same disease at different severity. MS can be Relapsing-Remitting, Secondary Progressive, Primary Progressive, Progressive Relapsing. http://multiplesclerosis.com/us/treatment.php

RRMS is the most common and the least severe.

Macular degeneration can be WET or DRY. http://www.mayoclinic.org/diseases-conditions/wet-macular-degeneration/basics/definition/CON-20043518

http://www.mayoclinic.org/diseases-conditions/macular-degeneration/basics/definition/con-20075882

The Dry is more common and less severe.

I am more than certain that CFS is the more common and less severe form of ME. And if we study them I am sure that we will find this out but we have to have FUNDING. And someday when we really study this disease I bet they will come up with a more accurate name for BOTH of them. ME is also a symptom, a SEVERE one, but a symptom of what is really going on with a yet to be named Neuro-Immune disease.

There are 10 different breast cancers but they are all breast cancer. All with their own severity and approaches. I think ME/CFS is the same. Still the same Neuro-Immune disease but will have different severity and approaches.

However, GET and CBT are injuring and further disabling ME and CFS patients and PEM is not being accurately recognized for either diagnosis due to a bad Australian study and UK studies that use diagnostic criteria that brings in patients that are actually suffering from depression or other illnesses and diseases such as OA and RA the CDC brought in their recommendations.

Dr. Nancy Klimas and others are working on the PEM research for ME/CFS patients. This is going to jeopardize their work. Not to mention the work on Cytokines that needs to be expanded by Drs. Hornig and Lipkin. They believe if they can expand their studies they will have a blood test within 2 years. How can they get the funding for this when you just wiped the disease off the books financially and medically? They use Fukuda and the CCC to diagnose each patient. Fukuda works and it is how I was diagnosed by a Rheumatologist and Psychiatrist in 2002/3.

Sincerely,
XX

p.s. - Both NM Senators received the same e-mail through their FORMS on their sites. Tom Udall and Martin Heinrich and Udall was informed that I contacted both them and all of you. (I forgot to let Heinrich know this but I told Udall that I had contacted Martin and to touch base with him.)

This is the response from the NM Senator.

Thank you for contacting me regarding Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS). I appreciate knowing your thoughts and concerns on this important issue.

ME is a disease that lacks a universally accepted definition, often linked with CFS. The disease is characterized by six months of debilitating fatigue, poor stamina, and problems with attention and short-term memory. The disease disproportionately affects women and is estimated to touch one in four million in the United States. The World Health Organization has classified ME as a neurological disease in its International Classification of Diseases since 1969.

In February 2015, the Institute of Medicine (IOM) published "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness," which researched the many conditions associated with this disease in order to develop a case definition useful for research, diagnosis, and treatment. The committee's report states ME/CFS is a "serious, chronic, complex, and systemic disease" that can greatly affect the lives of those with the disease. In addition, the report discusses the name currently associated with the disease, suggesting the disease be reclassified with a name that more accurately and appropriately describes the condition. As such, the committee proposes the name "Systemic Exertion Intolerance Disease (SEID)" be used in diagnosing, researching, and treating the disease.

Lastly, the committee encourages broad dissemination and use of the new criteria in order to improve understanding of the disease among public health providers and the general public. As your senator, please rest assured I will continue supporting public health research at the National Institutes of Health, and I will keep your views in mind should legislation regarding this disease come before the United States Senate for consideration.

Again, thank you for contacting me. I hope you will continue keeping me informed of the issues important to you.

Sign-up to receive email updates for the latest news on issues important to you.
Sincerely,

MARTIN HEINRICH
United States Senator

_____________________________________________________________________________________________________
I think it was a thoughtful response based on all the facts and I have a feeling that the idea behind wiping out CFS is because they believe it will be replaced with SEID. Of course, that has not happened yet but perhaps that is why CFS was Zeroed out but they do not have SEID formally placed on the "books". And it would have been nice to let someone know the process if indeed that is what they are planning on doing.


I know others stated this may be the case so I just wanted to post my letter and let others see the response form Martin Heinrich. If I get any other responses I will post here.
 

Snookum96

Active Member
I think it's a great sign that you got a response!

It does seem like a bit of a regurgitation of the facts. The facts seem to be accurate but I can't figure out if he has a position on the issue.

How many letters did you send out?
 

JennyJenny

Well-Known Member
I think it's a great sign that you got a response!

It does seem like a bit of a regurgitation of the facts. The facts seem to be accurate but I can't figure out if he has a position on the issue.

How many letters did you send out?
Sorry, I did not see this reply.

I sent this to the people Cort noted in his blog, I think there were four e-mail address to the staff working on the budget. Then I sent this to the two Senators for NM.
 

JennyJenny

Well-Known Member
I got a response from my other Senator, a letter in the mail.

Tom Udall

He said that he would keep my thoughts in mind and monitor CDC funding closely as the budget process continues.

So I think I may contact him again just to let him know how concerned I am that research funded by the CDC which Dr. Klimas is in the middle of could be jeopardized as she is working on PEM and Pediatric CFS.
 

Lissa

Well-Known Member
I think it's a great sign that you got a response!

It does seem like a bit of a regurgitation of the facts. The facts seem to be accurate but I can't figure out if he has a position on the issue.

How many letters did you send out?

Very interesting.... The letter looks incredibly similar to a reply from a Senator that my father in law received. It also seemed canned... Regurgitating facts etc. Different state, same fuzzy non-position. Things that make you go hmmm....
 

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