USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

it's on now

 

Elizabeth Unger read the update Dolphin posted above in post #303. There's a lot there, it's worth a read. I get the impression that the CDC and Elizabeth Unger personally is making an effort.

A transcript of the whole call will be posted. Next up Walitt and Nath.

 

Walitt is still going over a whole lot of history of ME/CFS and various post-infectious illnesses. Nothing very objectionable, but, if we wanted a history of ME/CFS, we wouldn't go to Walitt. It is one way to minimise discussion of the NIH ME/CFS study.

 

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

 

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.

 

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.

 

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.

 

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.

 

Thanks for the notes, Hutan. I watched it too but rather inattentively. I was shocked to hear at the end Walitt recommending brain training even though he admits there's no research evidence.

 

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.