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USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024
- Thread starter Sasha
- Start date
Dolphin
Senior Member (Voting Rights)
This is on on Monday.
Dolphin
Senior Member (Voting Rights)
CDC ME/CFS Program Update has just been posted in advance of today's meeting
https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf
https://www.cdc.gov/me-cfs/pdfs/23-sec-cdc-program-update-5-3-24.pdf
Dolphin
Senior Member (Voting Rights)
The prestigious Centres for Disease Control and Prevention (CDC) in the US have released their ME/CFS International Awareness Day page for 2024
https://www.cdc.gov/me-cfs/resources/awarenessday.html
https://www.cdc.gov/me-cfs/resources/awarenessday.html
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Dr Nath is now discussing the symptoms of Long Covid. He's talking about the Long Covid study. So far he is not discussing the NIH ME/CFS study. He's talking about other studies suggesting neuroinflammation after Covid-19 and damage to the BBB.
Suggestion that there is a problem switching from IgG to IgM.
Mention of anti-idiotypic antibodies
Suggestion that there is a problem switching from IgG to IgM.
Mention of anti-idiotypic antibodies
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How do you define a reactivated infection?
Cognitive therapy for brain fog. 'Functional disorders' appeared on slide.
Suggestion that women have B cell activation and men have T cell activation
There was a list of mainly immunological drugs that might be useful.
There is a Long Covid IgG/IgM crossover trial
Nath has finished. Virtually no mention of the NIH ME/CFS study. Thanks to the people who worked on the brain histology work. Seems very weird.
Suggestion that women have B cell activation and men have T cell activation
There was a list of mainly immunological drugs that might be useful.
There is a Long Covid IgG/IgM crossover trial
Nath has finished. Virtually no mention of the NIH ME/CFS study. Thanks to the people who worked on the brain histology work. Seems very weird.
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Surprise.
Questions:
Effort preference playing an important role in other disorders such as MS and Parkinsons- Walitt. Yes, it does. Further studies will bring more understanding
How can NINDS get more funding for treatment trials. Nath. He doesn't manage funding so he can't really answer. Federal agencies don't really have the funding; pharmaceutical companies are the ones who can do this.
Muscle findings - Nath. Innate immunity may be affecting muscles. Nath is most focused on trials. Hwang is looking at muscles.
Effort preference playing an important role in other disorders such as MS and Parkinsons- Walitt. Yes, it does. Further studies will bring more understanding
How can NINDS get more funding for treatment trials. Nath. He doesn't manage funding so he can't really answer. Federal agencies don't really have the funding; pharmaceutical companies are the ones who can do this.
Muscle findings - Nath. Innate immunity may be affecting muscles. Nath is most focused on trials. Hwang is looking at muscles.
Shameful.
Walitt - on the order of the parts of the diagram. 'It was an hypothesis generating programme - the diagram seems to be the most compelling story.'
Komaroff concludes that it is a brain disease caused by immune activation. Nath agrees. Paper shows huge amounts of immune dysfunction. (not sure with it's lack of power that it showed that much really)
fMRI and the application of a preconceived idea - Walitt. They did not expect to find the TPJ finding. Yes, samples sizes are small, fact that they saw such a large result makes it worthy of note. Worth looking at in a larger cohort. Did not comment on the questioner's assertion that there are other interpretations.
Komaroff concludes that it is a brain disease caused by immune activation. Nath agrees. Paper shows huge amounts of immune dysfunction. (not sure with it's lack of power that it showed that much really)
fMRI and the application of a preconceived idea - Walitt. They did not expect to find the TPJ finding. Yes, samples sizes are small, fact that they saw such a large result makes it worthy of note. Worth looking at in a larger cohort. Did not comment on the questioner's assertion that there are other interpretations.
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EBV in salivary glands - Walitt. Moving forward with a tissue procurement protocol to look for antigens, and investigate the EBV persistence idea.
Other inflammatory drugs - Nath. Sure, just need to trial them in a clinical trial.
Nath - No evidence that there are transmissible viruses. So antivirals won't help. There may be viral remnants.
Question about air pollution, could a viral illness just be an initiator. Unger - clear that the environment does interact with the infection, as does the host stress status. Nath agrees. It is possible that there are other pathways to the same outcome. Or not. Walitt - they just can't do everything. Hope that their findings will be useful to other groups.
Do you think that ANS retraining can help with ME/CFS? Walitt - does believe ANS/neuromuscular training , change how we respond to the environment, can be helpful. Mentions Levine system - sympathetic retraining. Visualisation, guided breathing. Breath training (book - Breath). Not sure that a particular method has been shown to be better than others, people should just choose something that works for them.
How to educate health care providers? Unger mentions some resources.
The video and transcript will be posted.
Other inflammatory drugs - Nath. Sure, just need to trial them in a clinical trial.
Nath - No evidence that there are transmissible viruses. So antivirals won't help. There may be viral remnants.
Question about air pollution, could a viral illness just be an initiator. Unger - clear that the environment does interact with the infection, as does the host stress status. Nath agrees. It is possible that there are other pathways to the same outcome. Or not. Walitt - they just can't do everything. Hope that their findings will be useful to other groups.
Do you think that ANS retraining can help with ME/CFS? Walitt - does believe ANS/neuromuscular training , change how we respond to the environment, can be helpful. Mentions Levine system - sympathetic retraining. Visualisation, guided breathing. Breath training (book - Breath). Not sure that a particular method has been shown to be better than others, people should just choose something that works for them.
How to educate health care providers? Unger mentions some resources.
The video and transcript will be posted.
Also he specifically did not address the questioner's point about multiple other areas including the contralateral TPJ.
SNT Gatchaman said:
Yeah, that was my question, and it was more coherent than the administrator managed to make it sound. I had a couple of other questions in that did not get answered.
All up, it was underwhelming and frustrating. There was no accountability to the ME/CFS community. Turns out the NIH ME/CFS study was a damp squib and it seems that the NIH is moving swiftly on, almost as if it did not happen.
Jonathan Edwards
Senior Member (Voting Rights)
Not sure why you would want to 'switch from IgG to IgM'. IgG does much better job. And you don't switch as such. You may produce new IgM if your IgG is inadequate.
Dakota15
Senior Member (Voting Rights)
Sharing Nath's reply to my question:
Question:
"Dr. Nath, last week you recommended the need for a platform trial where multiple drugs can be studied simultaneously as a next step. Is any funding currently in place to pursue this aspiration? If not, how can NINDS encourage and solicit grant applications on this proposed plan to help make this a reality? What are the next steps needed to accomplish this goal?"
From Nath:
“Platform trials is the way to go. A number of diseases are already looking into it. One of the diseases I study is ALS. There is an ongoing platform study in ALS. One can learn from that experience. So, Merit Cudkowicz at Harvard is the PI on that. It’s a multi-centered study. I think for platform studies you need large sample sizes, so you’re going to need multiple sites to enroll patients.
They are very expensive. Pharmaceutical companies really fund these things. Federal agencies don’t have that a kind of bandwidth. Most of the funding for clinical trials really come from pharmaceutical companies because they have the deep pockets to do these things, their budget is 10x that of NIH or more. I think what you need, is probably some kind of advisory committee that can go and design these things, try to raise funds from pharmaceutical companies to conduct these studies and learn from the ALS platform study. That is what I would suggest.”
https://twitter.com/i/web/status/1787575166605672822
Question:
"Dr. Nath, last week you recommended the need for a platform trial where multiple drugs can be studied simultaneously as a next step. Is any funding currently in place to pursue this aspiration? If not, how can NINDS encourage and solicit grant applications on this proposed plan to help make this a reality? What are the next steps needed to accomplish this goal?"
From Nath:
“Platform trials is the way to go. A number of diseases are already looking into it. One of the diseases I study is ALS. There is an ongoing platform study in ALS. One can learn from that experience. So, Merit Cudkowicz at Harvard is the PI on that. It’s a multi-centered study. I think for platform studies you need large sample sizes, so you’re going to need multiple sites to enroll patients.
They are very expensive. Pharmaceutical companies really fund these things. Federal agencies don’t have that a kind of bandwidth. Most of the funding for clinical trials really come from pharmaceutical companies because they have the deep pockets to do these things, their budget is 10x that of NIH or more. I think what you need, is probably some kind of advisory committee that can go and design these things, try to raise funds from pharmaceutical companies to conduct these studies and learn from the ALS platform study. That is what I would suggest.”
https://twitter.com/i/web/status/1787575166605672822