Details on NIH study

Navid

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It's not coming out of left field at all. Many of us have had the same reaction to the video. I'd say that at least 100 of us have commented on Walitt's video (among other things) on various threads about him.

My reaction to it:
http://forums.phoenixrising.me/index.php?threads/details-on-nih-study.43076/page-15#post-699821



You and Mark Twain may both be on to something:
View attachment 15193

Walitt strikes me as an imbecile who really means it.

I cannot understand why if you're sincerely researching a cause and treatment of a disease you would choose a leader who does not really believe this is a physiological disease....any logical minded person would think one of 2 things either the NIH doesn't really believe this is a disease with a pyhsiological cause that can be discovered and treated or they are trying to F_____ with us , and think we our morons who would willingly accept this imbecelic, douchebag as a good leader. A good leader for this research would have drive, energy and a ferociousness about solving the mystery. This Dr. speaks as though he is dealing with a bunch of over reacting, highly disturbed patients who are blowing their psychosomatic disease out of proportion and they just need to learn how to better accept the the hand they have been dealt. After watching this video I have 0 faith that the NIH truly wants to find a treatment to cure us. And I am PISSED!!!!!
 

Justin30

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Justin30

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I cannot understand why if you're sincerely researching a cause and treatment of a disease you would choose a leader who does not really believe this is a physiological disease....any logical minded person would think one of 2 things either the NIH doesn't really believe this is a disease with a pyhsiological cause that can be discovered and treated or they are trying to F_____ with us , and think we our morons who would willingly accept this imbecelic, douchebag as a good leader. A good leader for this research would have drive, energy and a ferociousness about solving the mystery. This Dr. speaks as though he is dealing with a bunch of over reacting, highly disturbed patients who are blowing their psychosomatic disease out of proportion and they just need to learn how to better accept the the hand they have been dealt. After watching this video I have 0 faith that the NIH truly wants to find a treatment to cure us. And I am PISSED!!!!!
I would just like to clarify a few points. Listed below:

  • Walitt is not the head of the study Dr Nath is
  • Walitt is the lead clinical advisor with a role supposedly more of a supervisor role in the study. This is BS.
  • There are 3 bad apples out of 26 I believe as per @Valentijn and others hard work reviewing the people involved in advisory/supervisor type roles. Walitt is one of them.
My points of view:
  • Walitt is no expert by any means in CFS/ME. This more a fact.
  • Any person watching that video of Walitt whether it be a Dr., normal person, sick person, teen, etc. Could see that this guy is an absolute clown. I personally feel that people just listening to him could see right through him. I could see Drs, researchers and nurses moching his views and pathetic nature. HE IS A DR THAT READS A STUDY AND TAKES THE EASY WAY OUT AS PER HIS VIEWS ON FM. HIS LACK OF INTIUTION AND PROBLEM SOLVING SKILLS ARE APPARENT WHEN IT COMES TO COMPLEX PROBLEMS, IT IS SHOWCASED THROUGH HIS WORDS IN THE VIDEO, HIS BRAIN IS NOT CAPABLE OF THINKING OUTSIDE THE BOX OR WAS IT HIS WALITT.....????
  • I Cant believe the NIH would higher a man like this with such closed views, but it would not suprise me due to the high degree of Government, Insurance and Pharma Company input in the US
  • Walitt should be removed from the study and I feel we should still be contesting this
  • Dr. Louise Oaklander MGH and Harvard Neurolgist is finding the physical, biological cause of FM in SFN. This has huge overlap with ME/CFS. She is also researching GWI and finding SFN. Not confirmed but very convincing evidence for FM. Her work is pointing out infectious trigers and autoimmunity in SFN...go figure. She is seeing huge pushback from major Academic Journals in the US...go figure
  • I believe the NIH does not have any other Scientists, Drs or Researchers that have actually seen many ME/CFS patients. Wallit and the 2 other stooges are the only ones with exposure. This is a big problem.
  • The NIH by saying this is a real disease biological in nature goes against what everyone in the whole world thinks of ME/CFS based on PACE. And maybe, just maybe they have to have quack somatophorm Drs that share similar views as WESLEY and Co. Just to say hey you messed up big with PACE and even our pyschosomatic viewing Drs can't contest that this is a serious disease which Francis Collins has already said. (I know this one was a long shot)
  • The NIH proof of disease and acknowledgement is going against CDC and Insurance company cover ups. Ie. Insurance only has to pay 2 yrs of disability because this disease was classified as a psychological illness (I think I correct about this, in Canada it has to be refered to as ME in order to get acknowledged as a serious illness by insurance)
Ok thats all that I can think about. @Navid myself and the community shares your frustration. I am PISSED TOO!!!!!!!
 

viggster

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In reference to funding further [extramural] research Dr. Koroshetz replied that "NIH has processes that ensure that research comes in and the most highly meritorious research is funded and that all groups have a fair hearing when they come in." He stated that this is a "tried-and-true" process.
Yes, and if Erica had been honest in quoting Koroshetz, she would have noted that he went on to say that those standard processes at NIH had failed the ME community and they are looking at other ways to stimulate research - like issuing RFA's.
 

Navid

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Thanks for your thoughtful, thorough reply Justin : )


I would just like to clarify a few points. Listed below:

  • Walitt is not the head of the study Dr Nath is
  • Walitt is the lead clinical advisor with a role supposedly more of a supervisor role in the study. This is BS.
  • There are 3 bad apples out of 26 I believe as per @Valentijn and others hard work reviewing the people involved in advisory/supervisor type roles. Walitt is one of them.
My points of view:
  • Walitt is no expert by any means in CFS/ME. This more a fact.
  • Any person watching that video of Walitt whether it be a Dr., normal person, sick person, teen, etc. Could see that this guy is an absolute clown. I personally feel that people just listening to him could see right through him. I could see Drs, researchers and nurses moching his views and pathetic nature. HE IS A DR THAT READS A STUDY AND TAKES THE EASY WAY OUT AS PER HIS VIEWS ON FM. HIS LACK OF INTIUTION AND PROBLEM SOLVING SKILLS ARE APPARENT WHEN IT COMES TO COMPLEX PROBLEMS, IT IS SHOWCASED THROUGH HIS WORDS IN THE VIDEO, HIS BRAIN IS NOT CAPABLE OF THINKING OUTSIDE THE BOX OR WAS IT HIS WALITT.....????
  • I Cant believe the NIH would higher a man like this with such closed views, but it would not suprise me due to the high degree of Government, Insurance and Pharma Company input in the US
  • Walitt should be removed from the study and I feel we should still be contesting this
  • Dr. Louise Oaklander MGH and Harvard Neurolgist is finding the physical, biological cause of FM in SFN. This has huge overlap with ME/CFS. She is also researching GWI and finding SFN. Not confirmed but very convincing evidence for FM. Her work is pointing out infectious trigers and autoimmunity in SFN...go figure. She is seeing huge pushback from major Academic Journals in the US...go figure
  • I believe the NIH does not have any other Scientists, Drs or Researchers that have actually seen many ME/CFS patients. Wallit and the 2 other stooges are the only ones with exposure. This is a big problem.
  • The NIH by saying this is a real disease biological in nature goes against what everyone in the whole world thinks of ME/CFS based on PACE. And maybe, just maybe they have to have quack somatophorm Drs that share similar views as WESLEY and Co. Just to say hey you messed up big with PACE and even our pyschosomatic viewing Drs can't contest that this is a serious disease which Francis Collins has already said. (I know this one was a long shot)
  • The NIH proof of disease and acknowledgement is going against CDC and Insurance company cover ups. Ie. Insurance only has to pay 2 yrs of disability because this disease was classified as a psychological illness (I think I correct about this, in Canada it has to be refered to as ME in order to get acknowledged as a serious illness by insurance)
Ok thats all that I can think about. @Navid myself and the community shares your frustration. I am PISSED TOO!!!!!!!
 

lauluce

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At the just-completed CDC Grand Rounds, Dr. Avindra Nath of NINDS spoke fairly quickly and he presented a lot of details. I didn't take good notes, so others should fill in.

- NIH will do a 3 phase study, starting with observation (the first study w/ 40+ patients) through treatment
- Immune profiling, microbiome, autoantibodies a few things studied
- Testing will be done pre- and post-exercise
- 1500 cytokines/analytes will be examined in immune cells
- NIH will make stem cells + neurons + humanized mice with ME patient cells - they are making a mouse model of the illness
- Patient Advisory Committee will help guide the studies
- 25 + people at NIH working on the study
- Drs. Unger + Lipkin are senior advisers

Lots more details went by too quickly for me to type out.
when will this study take place? is it already funded? tranks! sorry to ask this kind of question, buy my energy is just enough to do my job, of which my son depends; I don´t have much energy and mental stamina left for reading much more :(
 

Comet

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when will this study take place? is it already funded? tranks! sorry to ask this kind of question, buy my energy is just enough to do my job, of which my son depends; I don´t have much energy and mental stamina left for reading much more :(
I think they will start recruiting this summer. Dr. Nath was just quoted somewhere saying results in three years, I believe.
 

lauluce

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I think they will start recruiting this summer. Dr. Nath was just quoted somewhere saying results in three years, I believe.
3 years is OK, less that I was expectings... with the limiten founding anybody researching ME has, those are the the schedules... when do you think we´ll finally have some sort of answer?
 

Comet

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3 years is OK, less that I was expectings... with the limiten founding anybody researching ME has, those are the the schedules... when do you think we´ll finally have some sort of answer?
Unfortunately, I haven't got a clue. Don't forget Ron Davis and Dr. Naviaux, Lipkin/Hornig and Fluge/Mella.

There is at least one big data study scheduled for the UK, I believe too. And also Dr. Maureen Hanson is doing mitochondrial research (?).

Keep in mind that this information is all subject to some very foggy brain cells. Lol. :ill:
 

lauluce

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Unfortunately, I haven't got a clue. Don't forget Ron Davis and Dr. Naviaux, Lipkin/Hornig and Fluge/Mella.

There is at least one big data study scheduled for the UK, I believe too. And also Dr. Maureen Hanson is doing mitochondrial research (?).

Keep in mind that this information is all subject to some very foggy brain cells. Lol. :ill:
yes, we are indeed very weak, both in physical and cognitive aspects, fighting for our cause often gets very difficult. For example yesterday I made an expensive mistake, normally I come and go from an to my workplace which is 8 blocks away from my home, by bike, but at absolute minium speed, that´s as much as I can do. Yestarday I was getting late and I speeded up for 3 blocks... BIG MISTAKE, now I´m still completly exhausted and in pain and I guess I will be for a few days... well, my case is moderate anyway compared to others here
 
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Anyone got up to date info?

List of the patient advisory committee members, current and change to the associate investigators?

Is Leoroy Saligan still involved?