New CDC CFS/ME Website & Dangerous Lies!

New CDC CFS/ME Website & Dangerous Lies!

New name already implemented by the CDC?

This could do more harm then they have done is 30 years!

By: Carol Geraci, Copyright (C) 2010 Do not use without permission.

The new CDC CFS/ME Website is scandalous, dangerous and reprehensible.  The CDC is now adopting the UK’s treatment protocols for CBT, GET, professional counseling and they even say that lifting light weights and stretching can help people with CFS feel better. The CDC is sending doctors to the UK’s St. Barts website for treatment guidelines (including NICE).

They lie about XMRV, serious infections, immune and neurological dysfunction in patients. This is a serious misrepresentation of how severely ill patients are. The CDC CFS website is where treating doctors look for clinical guidelines, testing and treatments. It is also where the media looks for information and your families!

CDC CFS/ME New Website Denies XMRV  

The CDC fails to mention the XMRV studies from NIH, FDA, Harvard, National Cancer Institute, WPI and Cleveland Clinic.  The CDC denies any connection between XMRV and ME/CFS!

From New CDC Website lies -

CDC scientists and colleagues, using a combination of molecular and serologic tests, found no evidence of XMRV in people with CFS or in healthy people.

http://www.cdc.gov/xmrv/updates.html

 Name Change & New CDC CFS/ME Website

Patients are all wondering what is going on with the name change (from CFSAC meeting) to include ME (not to change the name to ME but to include ME).  The name change looks like it actually come from the CDC’s own new website. The CDC already uses the name CFS/ME!

The CDC’s new website- Chronic Fatigue Syndrome/ME http://www.cdc.gov/cfs/toolkit/get.html

The UK created the protocols now being adopted by the CDC! The UK uses the term CFS/ME in all the website and documents.

Could this be the real reason for new name change?  The name change has nothing to do with adopting the Canadian guidelines or using new definitions for the real ME definition.

The new protocol, guidelines and treatments are dangerous for both US and worldwide patients. Subjecting patients to these protocols could cause permanent damage.  The new website is far worse than the old website. Remember the US did not create these treatments protocols nor have they ever been used in the US before! This is dangerous for US and patients worldwide.

Implications & Consequence

So does the new name change make our illness look more serious? Will doctors now take our illness serious? Will we now get treatments, testing and doctors to help us? Will patients be taken serious?

 The new website is far worse than before.

We need real science based clinical studies and treatments. The new website now omits that patients suffer worse than someone with severe as congestive heart failure, end stage renal failure, MS and late stage aids.

The new website is more dangerous, deceitful, misleading and deceptive. Take a look at this new website for yourself and decide. Patients should be outraged. We need to take action now against this website.

Here are some clips from the new website please take a look at it and the link to St. Bart. This is going to hurt the community not just the US but worldwide since all countries are looking at the US for information.

If they go to the CDC they will now thing there is no threat from XMRV they may take the ban off the blood supply. Remember this site is New!

*Please read Note at the end.

CDC CFS Website Main Page – References and links

 http://www.cdc.gov/cfs/

The GET Guide 2008 by Chronic Fatigue Syndrome/ME Service at St. Bartholomew's Hospital can be helpful in structuring your graded exercise plan. http://www.bartscfsme.org/index.html

  http://www.cdc.gov/cfs/toolkit/get.html

http://www.nice.org.uk/guidance/CG53

CFS Toolkit and additional information for Healthcare Professionals

http://www.cdc.gov/cfs/hcp.html

Treatment Optionshttp://www.cdc.gov/cfs/general/treatment/index.html

There are many different types of treatment and management tools available for Chronic Fatigue Syndrome. These include:

·         Professional Counseling

·         Cognitive Behavioral Therapy (CBT)

·         Graded Exercise Therapy (GET)

·         Symptomatic Treatment

·         Alternative Therapies

·         Support Groups

·         Pharmacologic Therapy

·         Sleep Hygiene

·         Pain Therapy

·         Orthostatic Instability Treatment

·         Antidepressants

Toolkit- CBT

http://www.cdc.gov/cfs/toolkit/cbt.html

·         CBT is used for medical and psychological illnesses. It has also been used to help    people recover from cardiovascular disease, sleep disorders, diabetes, cancer, and orthopedic injuries.

·         CBT has been shown to be effective in CFS.

·         CBT makes patients aware of the stressors that make symptoms worse.

·         CBT is often combined with increased physical activity or gradual exercise therapy.

·         Trained healthcare professionals, such as psychologists, nurses, physical therapists, occupational therapists, can all guide a person through CBT.

·         CBT must be paced, personalized, and tailored to the individual’s level.

·         In order for CBT to be successful, people in CBT must take personal responsibility for change.

·         If CBT is not covered by insurance, people with CFS can substitute a provider who is knowledgeable about CFS. This provider can lead CFS patients to understand how their behavior is impacting the illness, and set up activity and exercise programs that are useful.

Local mental health professional groups, physical and occupational therapists, or health care organizations can be contacted to find a certified cognitive therapist.

Lifting light weights and stretching can help people with CFS feel better.

 People can start with using their body weight (for example, raising their arms) and gradually increase to wall push ups, modified chair dips, and toe raises. Strengthening activity should precede aerobic activity.http://www.cdc.gov/cfs/toolkit/get.html

CDC lies about XMRV and CFS

 http://www.cdc.gov/xmrv/updates.html

Note:

CFSAC’s members in the last two hours of the conference seem to be showing concern about patients for the first time. I appreciate the concern they showed.

CFSAC members cannot change the name of an illness. Only the CDC can do this. So did the members already know in advance the CDC was changing the name CFS/ME? It is very clear from the CDC website they are adopting the name change long before the members took a vote. The CDC website already used the term Chronic Fatigue Syndrome/ME. Did members do this to appease patients? Are they trying to calm patient actions down and letter writing campaigns? Are they trying to make us feel like they are finally doing something to help us? Remember this was a three day meeting and only in the last two hours did they begin to really speak out of concern.

The new CDC website is also listed on the CFSAC’s website! It is still listed under the podcast so any doctor, family member or anyone who goes to CFSAC’s site can see the new CDC website. Would you want your doctor or anyone to see what is on this website?

 Also, do not  forget CFSAC did not invite Dr. Mikovits to speak. Nor did they speak about XMRV, 5,000 scientific studies, HHV-6a, CMV, other infections or immune and neurological dysfunction.

Many speakers continued using the word “Chronic Fatigue” to describe patients. Not one CFSAC member asked anyone to refrain from using this term. If they care about us why would they allow us being called “Chronic Fatigue” for three days? Why just in the last two hours did members express concern and act like by voting on changing the name was some historic moment when the CDC already used the term CFS/ME many months ago on the new website?

For the CFSAC members not to denounce, condemn and reprimand the new CDC website shows they are compliment with the CDC and not looking out for our best interests. The CFSAC’s own agenda also seemed in line with the new CDC website.

If CFSAC members care about patients like they say they do, they need to get the CDC to remove the new website immediately. The new CDC website needs to be abolished.  It is Urgent the old website be put back immediately!

We need to take Action Now! 

May the flame of fire unite love in our hearts, may patients unite together, may we show tender care and kindness towards each other now more than ever.  No matter what country or what the name is called, we are all suffering at the hands of corruption, may we stand together as one force and be united in our cause now more than ever.

Carol Anna Geraci


 Please help! All patients need to be involved! All ideas welcome.



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