Over the weekend we wrote to NIH to share our article about Brian Walitt, along with comments from the community. We have received an initial response, but expect there will be more responses forthcoming that directly address patients’ concerns. The NIH also said they are finalizing a communications plan on the study so that communications will be less ad-hoc and more transparent to the entire community, and are organizing a phone call to answer questions about the study. In the meantime, we are working on finalizing a petition which we will share as soon as it is completed. All members of the community are also welcome to submit their own petitions on any topic at http://my.meaction.net/petition/new?source=header.
NIH’s initial response:
Dear Jen and Beth,
Thank you for sharing your thoughts and concerns. Dr. Koroshetz, as Chair of the Trans-NIH ME/CFS Working Group, and I are excited about the study on ME/CFS that will begin soon at the NIH Clinical Center. It is the first step of what the NIH hopes will be a broader national approach to better understand the biological basis of ME/CFS and the development of effective therapies.
In terms of trial leadership, Dr. Nath will serve as the Principal Investigator in charge of study design, as well as its execution, analysis and interpretation of the data. As the Lead Associate Investigator, Brain Walitt will assist Dr. Nath with the oversight of the day-to-day clinical operations of the protocol. Dr. Walitt will work with the CDC and the NIH ME/CFS executive committee to coordinate screening of potential participants for the study. He will ensure that participants are provided with clear details of the research study prior to enrollment as part of the NIH informed consent process and will coordinate participants’ care with the local medical providers. He will also help integrate the work of the team of experts who are collaborating in this complex undertaking and will provide clinical oversight for the study participants during their time at the NIH Clinical Center.
The NIH has unique resources to bring to bear on ME/CFS, especially with respect to neurology, immunology, radiology, nursing and rehabilitation science. We also have a dedicated, multidisciplinary team that is eager to address this challenge. We have utmost confidence in the team, which combines the expertise of multiple NIH Institutes including NINDS, the National Institute of Allergy and Infectious Diseases, National Institute of Nursing Research and National Heart, Lung, and Blood Institute. We sincerely believe that the combined resources and expertise of the NIH will shed light on a previously unsolved medical puzzle. With your help, we are ready to get started on the path that we hope will lead to improved diagnosis, effective treatments, and, ultimately, a cure for ME/CFS.
11 thoughts on “NIH's initial response to article and comments on Walitt”
Who was the letter written to and who answered back? The article doesn’t say.
Hi Mary Ann- Good question. It was written to Vicky Whittemore and the response came from her. We’ve added that in.
I wanted to add that I think it is very unlikely that the response was written by Dr. Whittemore or represents her personal views. It looks like it was probably written by a press officer to explain NIH’s initial position, which I think is changeable. As SMCI mentioned at http://solvecfs.org/NIH-Study, “Dr. Whittemore was very receptive to our strong opposition to Dr. Walitt’s participation in the study.”
Nice that they reposed but it is kind of a non answer don’t you think? They didn’t really address the specific criticism about Dr Walitt.
My thoughts exactly. The issue was simply not addressed.
It sounds like a very large role and it is coming to light there are at least 4 others who are on record as having CBT GET, PACE, somataform, chronic lyme deniers affiliations ….
I don’t want these people near this hugely important investigation. The results and their interpretations of results and finally their recommendations for treatment will have to be lived with for years.
Basically, their response seems to be that they are going forward full steam ahead and hope at some point to have some formal communication with us, preferably after all the important decisions have been finalized. I don’t like how they keep saying they are starting soon.
“excited about the study on ME/CFS that will begin soon at the NIH Clinical Center. It is the first step of what the NIH hopes will be a broader national approach to better understand the biological basis of ME/CFS and the development of effective therapies. ” This is part of a plan to Nationalize ME treatment and it is being directed by newbies, It tales years to start to understand this.
I know people want to be nice and reasonable but at the very least this needs to be slowed down and reworked. This can not go forward as planned with these people. The controls alone could mess this whole thing up.
“Soon” in NIH language usually means 3-6 months.
This reply from dr Whittemore had an undertone of ‘Walitt is here to stay’, and that worries me.
I hope that the NIH goes on social media and make notes of what patients know about their super-duper team. Some are good, some are so so and others are very bad.
Patients have been neglected for 3 long decades. It is time that the very best of NIH comes out, and that all team members are proven non-psychologizers, non-integrative/holistic. The last thing we need is to be told we need to meditate our way out of the disease.
We told you we were sick…
When I read of Wallit’s appointment, and saw things he had written, it felt like a complete kick in the teeth that he should even be considered for such an important roll. This response from NIH does nothing to reduce my concern. Including investigators with this approach to ME is likely to produce an investigation will simply show what the biopsychosocial crowd wish it to show. What a waste of resources.
Can you please discuss with the NIH what Dr Wallits labs area of focus is? he is the lead clinical investigator. But from where in the NIH?
We need an answer as to what his “lab” studies? What faculty of medicine is it in? Why he has been chosen if he is not part of either the immune or neurological institutes or a faculty that specifically studies inflamation in the body and brain.
This is very, very, very serious. ME/CFS is one of the largest medical cover ups in modern day society. We don’t want PACE biases to hit us again!
We need to stand united and face this head on to remove biased individuals. Can this issue not be brought up in the Press, Social Media, Rally, etc.?
Has any one of the Top ME Drs in the US and around the world been contacted to write a letter to the NIH? Or at least consult with them and their thoughts on Wallits appointment as lead investigator? Klimas, Peterson, Bateman, KDM, Kaufman, etc
With the IOM Announcement to suggest the stopping of Funding to GWI, it is of utmost importancr that we not lose again to the insurance companies and polotics who have deemed this as a mental illness for decades so to ensure we not recieve disability.
I agree it reads like a press handout rather than a specific response to our concerns.
Particularly concerning is his role in the selection of participants, perhaps the most important job in establishing the validity of the research.
He could well discredit the whole project. Lessons need to be learned from the PACE trial now under investigation. The NiH needs to be aware that the same people will be scrutinising their findings.
His doesn’t have the qualifications or any evidence to back up his confident assertion that it is a “psychosomatic experience,” part of the “range of normal,” rather than an abnormal disease state; a way of “dealing with the difficulties of just being a human.”
Is someone so easily satisfied suitable for the Role?
He doesn’t state his beliefs on the NiH page or the link to his bio. He believes patients should be allowed to think you believe their faulty beliefs.
They talk of selecting participants from “established clinics”. What is the model they work by? Who refers them? If it is psychological then the findings will be biased.
I have other concerns too.
Nature of ME needs to be understood. eg PEM. Any research that isn’t repeated after 24-72 hours is meaningless. Activity the week before also needs to be recorded. We rest in advance of important events.
See http://www.ncbi.nlm.nih.gov/pubmed/23813081 “Follow-up classification analysis differentiated between groups with an overall accuracy of 95.1%.” on the second day,
with no significant difference on the first day.
IOM survey refers to 117 pieces of research. Some very good, eg brain imaging, mitochondria, but underfunded. Should not these be followed up rather than starting from scratch?
Comments are closed.