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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dr Nath's intra-mural study at NIH is currently recruiting

Knockknock

Senior Member
Messages
212
I am not arguing that NIH funding is woefully inadequate or that the NIH has neglected the ME/CFS community. Have you viewed the video webinar presentation by Dr. Avindra Nath? My opinion is that his efforts are genuine.

Are you suggesting that nothing of value can come from this intra mural study? Would you argue that this study shouldn't be conducted? Of course, I wish the NIH devoted $250 million or more to ME/CFS research. But we need more that financial resources. Listen to Dr. Nath's interview. ME/CFS community desperately needs researchers and clinicians that are even interested in studying this disease. You can't force someone to do research in an area where they have no interest.

If I am recruited for this study, I hope to advocate for the ME/CFS community in any way that I can given the opportunity.
Hi RYO,
I wouldn't doubt that Doctor Nath's interview show real good intentions to help the Me/ CFS comunity.
If its true or just part of the political agenda? We gona know that in a couple years, francis collins sounded very truthfull and meaningfull when he said that Me/cfs was neglected, when he asure to use all fire power and look actions speak laugther than words.
You can say and believe all you want sonim
I, but the actions ia what it reflect the reality.
More doctors more wide knowledge ofcourse we need that
BUT


Reality is that there is plenty of doctors out there with real knowledge, montoya, klimas, irma rey, lipkin and several doctors and researchers with the proper funding will go deep into research, there is alot new technology not aveilable years ago, to detect viruses, genes, mutations, they simply dont donit becouse they are seen thesame pattern, thesame resistance, thesame limited funding.
I mentioned this before, Me/cfs has double or triple if not more, the amount of cases in USA and around the world, neuro immune illnesess are leading the epidemic.
13 -15 million is not even close to the sense of unrgency that an illness like this deserve.
Especially (abandoned)(ignored)been neglected for decades.
Its thesame pattern over and over to much talk, but
little real action, small controled studies.. 50 patients is not enough, not even close.
There is not a single CFS researcher and experianced doctor in that study.
Klimas, montoya and many other doctors are desperate for funding.
They just dont get it from Nih.

You maybe right about him, unfortunanly above him there is much much powerfull forces.
To me they are afraid, concern of expousing whats behind this illness, that ofcourse increasing funding and research will eventually lead to that.

I can not think other wise, notging else make sense to still limiting research, choosing such small budget still.

Show me what they have really done, not what they saying, what they are saying compare to what they have said and what they had done to what they are doing is very similar to NONE
 
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Knockknock

Senior Member
Messages
212
I am not arguing that NIH funding is woefully inadequate or that the NIH has neglected the ME/CFS community. Have you viewed the video webinar presentation by Dr. Avindra Nath? My opinion is that his efforts are genuine.

Are you suggesting that nothing of value can come from this intra mural study? Would you argue that this study shouldn't be conducted? Of course, I wish the NIH devoted $250 million or more to ME/CFS research. But we need more that financial resources. Listen to Dr. Nath's interview. ME/CFS community desperately needs researchers and clinicians that are even interested in studying this disease. You can't force someone to do research in an area where they have no interest.

If I am recruited for this study, I hope to advocate for the ME/CFS community in any way that I can given the opportunity.
That will be great Avocancy ia what is shading ligh to this illness.
Expousing how unexplainably neglected it ha been.
Even now when they accepted what its
 

viggster

Senior Member
Messages
464
Just fyi to update my previous post...I am accepted to the study. I didn't have good medical records from before I got sick, but the NIH team is accepting letters from people who knew me as evidence of my prior good health.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just fyi to update my previous post...I am accepted to the study. I didn't have good medical records from before I got sick, but the NIH team is accepting letters from people who knew me as evidence of my prior good health.

Congratulations and thank you for being willing to be a guinea-pig to benefit the rest of us! :balloons:
 
Messages
2,087
Just fyi to update my previous post...I am accepted to the study. I didn't have good medical records from before I got sick, but the NIH team is accepting letters from people who knew me as evidence of my prior good health.

Did they not see your photo at the continental divide in Colorado??
 

Knockknock

Senior Member
Messages
212
Just fyi to update my previous post...I am accepted to the study. I didn't have good medical records from before I got sick, but the NIH team is accepting letters from people who knew me as evidence of my prior good health.
Were do i register???
I dont believe in the Nih good intentions, but it will be really good to be part of it, so i can see what they are really doing and if its something really helpfull or just a show.
Can you sent me instructions.
 
Messages
2,087
Were do i register???
I dont believe in the Nih good intentions, but it will be really good to be part of it, so i can see what they are really doing and if its something really helpfull or just a show.
Can you sent me instructions.

I doubt any patient will 'see' what they are really doing. The real work would happen for some time, long after the patient visits.
 

RYO

Senior Member
Messages
350
Location
USA
Thanks.
Would you like to advise me in what to do?? To facilitate the process
You can contact Ms Gavin via email. You should explain in detail how and when you got sick. Also explain your chronic symptoms. You must provide extensive medical records. Carefully read the inclusion and exclusion criteria to make sure you qualify for study.

Good luck.
 

Knockknock

Senior Member
Messages
212
Than
You can contact Ms Gavin via email. You should explain in detail how and when you got sick. Also explain your chronic symptoms. You must provide extensive medical records. Carefully read the inclusion and exclusion criteria to make sure you qualify for study.

Good luck.
thank you.
 

viggster

Senior Member
Messages
464
Did they not see your photo at the continental divide in Colorado??
Not sure, but testimonials from a few of my friends who have M.D.'s are sufficient.

Edit: I'm impressed with how thorough the NIH is being in trying to get a complete picture of a person's health/abilities before and after getting sick.
 

Knockknock

Senior Member
Messages
212
Not sure, but testimonials from a few of my friends who have M.D.'s are sufficient.

Edit: I'm impressed with how thorough the NIH is being in trying to get a complete picture of a person's health/abilities before and after getting sick.
Really!!!
So you think this time around they are real????
 

viggster

Senior Member
Messages
464
Here's a sample schedule the NIH provided to give an idea of how things will go. They originally planned about a week for each ME patient but have stretched it out to more like 10 days now.


Admit
Clincial Center

Sun, Mar 19

5:00 PM – 6:00 PM

0


No breakfast until blood draw and saliva collection are complete
DO NOT BRUSH TEETH!

Mon, Mar 20

7:00 AM – 8:00 AM

Informed Consent/Dr. Walitt, Joy Kreskow
7SW-N

8:00 AM – 9:00 AM

Buccal Swab/Saliva Collection/Urine Sample; Anita Jones, Ben Coleman
7SW-N

9:00 AM – 9:30 AM

Venous Assessment
Dowling

9:30 AM – 10:00 AM

Blood Draw/Anita Jones
7SW-N

10:00 AM – 11:00 AM

Breakfast
7SW-N

11:00 AM – 12:00 PM

Physical Exam/Dr. Walitt, Joy Kreskow
7SW-N

12:00 PM – 1:00 PM

Holter Monitor
EKG

1:00 PM – 2:00 PM

Lunch/Break
7SW-N

2:00 PM – 3:00 PM

Symptom Profile, Medication Review/Dr. Walitt, Joy Kreskow
7SW-N

3:00 PM – 4:00 PM

Ad hoc time/Rest
7SW-N

4:00 PM – 5:00 PM

Order Dinner
7SW-N

5:00 PM – 6:00 PM

Dinner
7Sw-N

6:00 PM – 7:00 PM

0


Order Breakfast and lunch

Tue, Mar 21

7:00 AM – 8:00 AM


Breakfast
7SW-N

8:00 AM – 9:00 AM


Muscle Strength Testing/Ben Coleman
7SW-N

9:00 AM – 10:00 AM


Psychological Assessment/Dr. Sinclair
7SW-N

10:00 AM – 12:00 PM


Lunch
7Sw-N

12:00 PM – 1:00 PM


Occupational Therapy/Bonnie Hodsdon
7SW-N

1:00 PM – 3:30 PM


Rest
7SW-N

3:30 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM

0


Breakfast
Hydrate Well

Wed, Mar 22

8:00 AM – 9:00 AM


Lumbar Puncture
7SW-N

9:00 AM – 11:00 AM


Lie Flat
7SW-N

11:00 AM – 1:00 PM


Lunch
7SW-N

1:00 PM – 2:00 PM


Rest

2:00 PM – 5:00 PM


Order Dinner. Low fat, Low cholesterol, No caffeine
7SW-N

5:00 PM – 6:00 PM


Dinner
7Sw-N

6:00 PM – 7:00 PM

0


Breakfast. Low fat, low cholesterol. Hydrate well. No caffeine
7SW-N

Thu, Mar 23

8:00 AM – 9:00 AM


Lymphocytapheresis
Dowling

9:00 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch
7Sw-N

12:30 PM – 2:00 PM


Symptom Assessment Forms (Pack 1)/Ben Coleman
7Sw-N

2:00 PM – 3:30 PM


Rest
7Sw-N

3:30 PM – 5:00 PM


Order Dinner
7Sw-N

5:00 PM – 6:00 PM


Dinner
7Sw-N

6:00 PM – 7:00 PM

0


Order Breakfast
7Sw-N

Fri, Mar 24

8:00 AM – 8:30 AM


Breakfast
7Sw-N

8:30 AM – 9:30 AM


Neuropsychological Testing/Michael Tierney

9:30 AM – 1:00 PM


Lunch

1:00 PM – 2:00 PM


Rest
7Sw-N

2:00 PM – 5:00 PM


Order Dinner
7Sw-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM

0


Order Breakfast
7SW-N

Mon, Mar 27

8:00 AM – 9:00 AM


Breakfast
7SW-N

9:00 AM – 10:00 AM


Clinical Assessments/Dr. Gill, Dr. Friedman, Stacy Solin
7SW-N

10:00 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch

12:30 PM – 2:00 PM


Symptom Assessment Forms (Pack 2)/Ben Coleman

2:00 PM – 3:30 PM


Rest

3:30 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 5:30 PM


Dinner
7SW-N

5:30 PM – 7:00 PM

0


Order Breakfast. No fruit, No fruit Juices, No caffeine.
7SW-N

Tue, Mar 28

8:00 AM – 8:30 AM


Light Breakfast
7Sw-N

8:30 AM – 9:30 AM


Autonomic Testing/Dr. Goldstein
7SW-N

9:30 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch

12:30 PM – 1:30 PM


Rest

1:30 PM – 5:00 PM


order dinner
7SW-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM

0


Order Breakfast
7SW-N

Wed, Mar 29

8:00 AM – 9:00 AM


Breakfast
7SW-N

9:00 AM – 10:00 AM


Psychiatric Inventories/Ben Coleman
7SW-N

10:00 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch
7Sw-N

12:30 PM – 1:30 PM


Rest
7SW-N

1:30 PM – 3:00 PM


Dr. Nath Assessment
7SW-N

3:00 PM – 4:00 PM


Rest
7SW-N

4:00 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM


Sleep Study
7SW-N

Wed, Mar 29

to

Thu, Mar 30

7:00 PM – 12:00 AM

0


Order Breakfast
7SW-N

Thu, Mar 30

8:00 AM – 8:30 AM


Breakfast
7Sw-N

8:30 AM – 9:30 AM


Dietitian Assessment
7SW-N

9:30 AM – 11:00 AM


Dr. Snow Interview
7SW-N

11:00 AM – 11:30 AM


Order Lunch
7SW-N

11:30 AM – 12:00 PM


Lunch
7SW-N

12:00 PM – 1:00 PM


Rest
7SW-N

1:00 PM – 3:00 PM


MRI

3:00 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 5:30 PM


Dinner
7SW-N

5:30 PM – 6:30 PM

0



Order Breakfast
7SW-N

Fri, Mar 31

8:00 AM – 8:30 AM


Breakfast
7SW-N

8:30 AM – 9:30 AM


Discharge
7SW-N

10:00 AM – 10:30 AM

0
 

Kati

Patient in training
Messages
5,497
What strikes me is psychology, neuro-psych and psychiatry assessment. One of them is completely legit, but you know, that is a lot of assessment for someone who is physically ill.

i wonder who is the Dr Gill who will perform the clinical assessment. The dr Fred Gill we know from NIH (was it state of knowledge meeting, 2011) was a psychologizer.

Best wishes @viggster
Here's a sample schedule the NIH provided to give an idea of how things will go. They originally planned about a week for each ME patient but have stretched it out to more like 10 days now.


Admit
Clincial Center

Sun, Mar 19

5:00 PM – 6:00 PM

0


No breakfast until blood draw and saliva collection are complete
DO NOT BRUSH TEETH!

Mon, Mar 20

7:00 AM – 8:00 AM

Informed Consent/Dr. Walitt, Joy Kreskow
7SW-N

8:00 AM – 9:00 AM

Buccal Swab/Saliva Collection/Urine Sample; Anita Jones, Ben Coleman
7SW-N

9:00 AM – 9:30 AM

Venous Assessment
Dowling

9:30 AM – 10:00 AM

Blood Draw/Anita Jones
7SW-N

10:00 AM – 11:00 AM

Breakfast
7SW-N

11:00 AM – 12:00 PM

Physical Exam/Dr. Walitt, Joy Kreskow
7SW-N

12:00 PM – 1:00 PM

Holter Monitor
EKG

1:00 PM – 2:00 PM

Lunch/Break
7SW-N

2:00 PM – 3:00 PM

Symptom Profile, Medication Review/Dr. Walitt, Joy Kreskow
7SW-N

3:00 PM – 4:00 PM

Ad hoc time/Rest
7SW-N

4:00 PM – 5:00 PM

Order Dinner
7SW-N

5:00 PM – 6:00 PM

Dinner
7Sw-N

6:00 PM – 7:00 PM

0


Order Breakfast and lunch

Tue, Mar 21

7:00 AM – 8:00 AM


Breakfast
7SW-N

8:00 AM – 9:00 AM


Muscle Strength Testing/Ben Coleman
7SW-N

9:00 AM – 10:00 AM


Psychological Assessment/Dr. Sinclair
7SW-N

10:00 AM – 12:00 PM


Lunch
7Sw-N

12:00 PM – 1:00 PM


Occupational Therapy/Bonnie Hodsdon
7SW-N

1:00 PM – 3:30 PM


Rest
7SW-N

3:30 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM

0


Breakfast
Hydrate Well

Wed, Mar 22

8:00 AM – 9:00 AM


Lumbar Puncture
7SW-N

9:00 AM – 11:00 AM


Lie Flat
7SW-N

11:00 AM – 1:00 PM


Lunch
7SW-N

1:00 PM – 2:00 PM


Rest

2:00 PM – 5:00 PM


Order Dinner. Low fat, Low cholesterol, No caffeine
7SW-N

5:00 PM – 6:00 PM


Dinner
7Sw-N

6:00 PM – 7:00 PM

0


Breakfast. Low fat, low cholesterol. Hydrate well. No caffeine
7SW-N

Thu, Mar 23

8:00 AM – 9:00 AM


Lymphocytapheresis
Dowling

9:00 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch
7Sw-N

12:30 PM – 2:00 PM


Symptom Assessment Forms (Pack 1)/Ben Coleman
7Sw-N

2:00 PM – 3:30 PM


Rest
7Sw-N

3:30 PM – 5:00 PM


Order Dinner
7Sw-N

5:00 PM – 6:00 PM


Dinner
7Sw-N

6:00 PM – 7:00 PM

0


Order Breakfast
7Sw-N

Fri, Mar 24

8:00 AM – 8:30 AM


Breakfast
7Sw-N

8:30 AM – 9:30 AM


Neuropsychological Testing/Michael Tierney

9:30 AM – 1:00 PM


Lunch

1:00 PM – 2:00 PM


Rest
7Sw-N

2:00 PM – 5:00 PM


Order Dinner
7Sw-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM

0


Order Breakfast
7SW-N

Mon, Mar 27

8:00 AM – 9:00 AM


Breakfast
7SW-N

9:00 AM – 10:00 AM


Clinical Assessments/Dr. Gill, Dr. Friedman, Stacy Solin
7SW-N

10:00 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch

12:30 PM – 2:00 PM


Symptom Assessment Forms (Pack 2)/Ben Coleman

2:00 PM – 3:30 PM


Rest

3:30 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 5:30 PM


Dinner
7SW-N

5:30 PM – 7:00 PM

0


Order Breakfast. No fruit, No fruit Juices, No caffeine.
7SW-N

Tue, Mar 28

8:00 AM – 8:30 AM


Light Breakfast
7Sw-N

8:30 AM – 9:30 AM


Autonomic Testing/Dr. Goldstein
7SW-N

9:30 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch

12:30 PM – 1:30 PM


Rest

1:30 PM – 5:00 PM


order dinner
7SW-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM

0


Order Breakfast
7SW-N

Wed, Mar 29

8:00 AM – 9:00 AM


Breakfast
7SW-N

9:00 AM – 10:00 AM


Psychiatric Inventories/Ben Coleman
7SW-N

10:00 AM – 12:00 PM


Order Lunch
7SW-N

12:00 PM – 12:30 PM


Lunch
7Sw-N

12:30 PM – 1:30 PM


Rest
7SW-N

1:30 PM – 3:00 PM


Dr. Nath Assessment
7SW-N

3:00 PM – 4:00 PM


Rest
7SW-N

4:00 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 6:00 PM


Dinner
7SW-N

6:00 PM – 7:00 PM


Sleep Study
7SW-N

Wed, Mar 29

to

Thu, Mar 30

7:00 PM – 12:00 AM

0


Order Breakfast
7SW-N

Thu, Mar 30

8:00 AM – 8:30 AM


Breakfast
7Sw-N

8:30 AM – 9:30 AM


Dietitian Assessment
7SW-N

9:30 AM – 11:00 AM


Dr. Snow Interview
7SW-N

11:00 AM – 11:30 AM


Order Lunch
7SW-N

11:30 AM – 12:00 PM


Lunch
7SW-N

12:00 PM – 1:00 PM


Rest
7SW-N

1:00 PM – 3:00 PM


MRI

3:00 PM – 5:00 PM


Order Dinner
7SW-N

5:00 PM – 5:30 PM


Dinner
7SW-N

5:30 PM – 6:30 PM

0



Order Breakfast
7SW-N

Fri, Mar 31

8:00 AM – 8:30 AM


Breakfast
7SW-N

8:30 AM – 9:30 AM


Discharge
7SW-N

10:00 AM – 10:30 AM

0

[/QUOTE
 
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