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NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16

Nielk

Senior Member
Messages
6,970
Please read, and if you agree sign this petition initiated by MEadvocacy.org calling for the cancellation of NIH clinic's fatigue study as well as Dr. Nath's presentation of this study at the CDC Grand Rounds on February 16th.

http://www.meadvocacy.org/http_www_meadvocacy_org_stop_nih_study

To: Dr. Francis Collins, Dr. Avindra Nath, and Dr. Brian T. Walitt at NIH and Dr. Tom Frieden and Dr. Elizabeth Unger at CDC

We, the undersigned, call on the National Institutes of Health (NIH) to immediately cancel the proposed NIH intramural clinical study using the 2005 empirical Reeves criteria. In addition, we call on the Centers for Disease Control and Prevention (CDC) to cancel Dr. Avindra Nath’s presentation of the aforementioned study at CDC’s Grand Rounds on February 16, 2016.

The Reeves definition is seriously flawed. It is a definition that was never accepted by mainstream science. It was in fact rejected by CFSAC in a formal recommendation. The design of this criteria used dubious questionnaires, with no stakeholders input and should have never been used since it was rejected by our experts. In addition, this proposed intramural small scale study is uniquely focused on persistent fatigue following an infection - not on the neuroimmune disease that patients with ME suffer from.

This study contradicts Dr. Collins’ statement to the patient community - “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”

Furthermore, the dissemination of this flawed information by Dr. Nath at the CDC’s Grand Rounds on February 16, will deliver misinformation to thousands of clinicians nationwide who will be attending and listening in to the program. They will falsely assume that ME is just ‘persistent fatigue’ and it will perpetuate their tendency to marginalize, mistreat and neglect ME patients’ true severe symptoms.

As it states in the preface to the 2011 International Consensus Criteria, written by ME experts: “There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, whichhinders progress, fosters skepticism, and wastes limited research monies.”

If NIH follows through with this study as is, it will propagate, aggravate and cause immeasurable harm to the estimated one million American ME patients, and will likely also negatively impact the estimated 17 million ME patients worldwide.

In place of this proposed study on idiopathic fatigue, we want NIH to initiate an intramural study whose protocol is pre-approved by ME expert researchers and contains stakeholder input. This study will be of ME patients diagnosed with our expert created ME criteria. This process must be transparent and communicated to the patient community.


The petition’s deadline for signatures is Sunday February 14th, at midnight. The petition will be sent out on Monday morning February 15th.
 

duncan

Senior Member
Messages
2,240
The protocol changes it might benefit from would likely mean canning half of the existing copy, and over-hauling most of the other half.
 

duncan

Senior Member
Messages
2,240
The NIH Lyme group is, in the eyes of some, stuck in 1994. Determining who still has Lyme vs who has been cured can appear at times to be a crap shoot.

How can we hope this NIH effort recruits appropriately for ME/CFS ( a contested disease) if one of two specified control groups is hopelessly mired in controversy?

Then there is the FMD group - here we are damned if we do say something, damned if we don't - the same position as the BPS school has seemed to delight in placing us over the past many years.

If it quacks like a duck, it's a dog. They need to fix this, and fix it proper.
 

Nielk

Senior Member
Messages
6,970
227 signatures so far. We are trying to get to 1,000 by Sunday midnight. If you agree with the petition, please take the time to sign and ask family and friends to sign as well. This is open to any nationality.
Thank you.
 

Nielk

Senior Member
Messages
6,970
Yes and he makes some very good points which are worth considering before rushing to sign any petition.
There is a whole thread with everyone's take on this proposed study where you can voice whatever opinions you have. If you don't like this petition, don't sign it. Apparently, many in the community do agree with it.
 

caledonia

Senior Member
There are so many things wrong with this NIH study. The study is designed the way it is because the NIH has an institutional bias against our disease. See Mary Dimmock's document Thirty Years of Disdain for more information.

If I was designing a study, it would be like what Ron Davis is doing - using a well characterized group of very severe ME patients, and studying all aspects using state of the art technology.

If I wanted to contrast with people who had an infection and who recovered, it would certainly not be with Lyme patients - another very controversial disease. The testing for Lyme is very problematic. I would use Epstein Barr or something like that.

I would not include people with psychiatric disease of any kind. It doesn't make any sense unless you believe ME has a psychological or psychiatric basis.

The problems with the Reeves definition are well known.

If the basics are screwed up, it doesn't matter if you study blood, urine, genetics, exercise capacity, yada yada yada.

They couldn't have made a worse study if they tried. This is garbage in - garbage out.

I encourage people to sign the petition, and also send a donation to a real study (aka Ron Davis's study).

http://www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/
 

Nielk

Senior Member
Messages
6,970
upload_2016-2-11_16-36-9.png

http://www.meadvocacy.org/http_www_meadvocacy_org_stop_nih_study
 

Kati

Patient in training
Messages
5,497
Sorry nielk, not signing this. cancel study presentation at CDC grand rounds? Hell no, I want to hear what is going to be said about it.

The more information we get at this point in time, the better. The leaked study designs rings a lot of alarms in my head, but at this point, i want to know what they have got to say for themselves. i will make up my mind after that.
 

jadam914

Foggy member
Messages
56
Location
Palmyra, Pa, USA
People MUST stop putting "empirical" with these criteria even in mentioning them like they did on the petition. There is NOTHING empirical by definition about Reeves. Saying something is empirical implies you are validating it.

Some one needs to remove such inflamority wording!
 
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Nielk

Senior Member
Messages
6,970
Sorry nielk, not signing this. cancel study presentation at CDC grand rounds? Hell no, I want to hear what is going to be said about it.

The more information we get at this point in time, the better. The leaked study designs rings a lot of alarms in my head, but at this point, i want to know what they have got to say for themselves. i will make up my mind after that.
I respect your choice. Don't forget, this meeting if for educational purposes for thousands of clinicians in the US. They are signing up because they get continuing educational credits. I believe that there is the risk of irreparable harm to have Dr. Nath present a study of "fatigue" in CFS patients. Once this takes place, there is no taking back the information that these clinicians hear. Even if they end up changing elements of the study, these clinicians will not know.

There is way too much stigma attached to us patients already. All this will do is reinforce it. I'm not willing to take that chance. And many others agree.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
It is unfortunate that the NIH fails to consult or communicate with the patient population and that the only way we know what's going on is when they err (leaked design) or when they speak publicly to 'professionals' and we hope to hear from the back of the room.

A petition is one way patients get to communicate. There is value in speaking up for what is wrong with their design.

Even if the NIH chooses not to hear.
 

Kati

Patient in training
Messages
5,497
I respect your choice. Don't forget, this meeting if for educational purposes for thousands of clinicians in the US. They are signing up because they get continuing educational credits. I believe that there is the risk of irreparable harm to have Dr. Nath present a study of "fatigue" in CFS patients. Once this takes place, there is no taking back the information that these clinicians hear. Even if they end up changing elements of the study, these clinicians will not know.

There is way too much stigma attached to us patients already. All this will do is reinforce it. I'm not willing to take that chance. And many others agree.
Thank you for respecting, @Nielk, it gives me hope that we can work together on common goals and common views that we have. It is important in moving forward, to remember that while we have different views and approaches, that we are sick, and need and deserve health care, sound research, and respect from our governments.