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

I'm having trouble with the passcode not being right, have others got in ok with that passcode?

 

(Thanks. I was joining from my browser, as I hadn't updated my zoom version, and with that the screen asking for the passcode appeared. When I updated my zoom version the screen asking for a passcode did not appear. It's odd as the Cdc did provide a passcode, it just didn't work.)

 

I was doing something else while listening, so I don't have much in the way of notes.

On the CDC update, I missed that, so I'm just going off the pdf provided before the meeting. At 5 pages, it's not so long to read but here's a summary and some comments on some interesting things there:

A new person in the CDC ME/CFS team. That's an interesting background, with rickettsias, Ebola and MERS all implicated in the triggering of ME/CFS.



As part of the CDC's educational programme, they had an event for nursing students at the Emory School of Nursing which they organised in conjunction with MEAction Georgia. While the event sounds good, but the scale of effort seems off by an order of magnitude. I don't know if the session was recorded?

MCAM = Multi-site Clinical Assessment of ME/CFS study
I can't recall what we have thought about the study, but a biobank and databank available to researchers sounds like a good initiative.
More from the MCAM study:

Those findings about cognition are very interesting - I'll link the studies if I can find them. Edit - Here it is:
Cognitive assessment in ME/CFS: a cognitive substudy of the multi-site clinical assessment of ME/CFS (MCAM), 2024, Lange, Unger +


National Association of School Nurses
CDC has a contract with the NASN, and here it does seem as though there is a good level of effort in educating medical professionals. They say they have reached 40,000 school nurses with educational materials during the 3 year NASN partnership, and 11,000 school nurses have undertaken CPD on ME/CFS in the past year.

ICUE

This seems to have involved some webinars, and some collaboration with patient organisations.



STOP ME/CFS project
CDC is working with the Emerging Infections Program in California and Kaiser Permanente Northern California. Work on quantifying the incidence of ME/CFS has been published. The study is ongoing.

Long COVID and Fatiguing Illness Recovery Program

I copied that out in full. It sounds positive. Of course, it depends a lot on what the webinars are saying, but at least they are mentioning post-exertional malaise. I wonder why the CDC hasn't focussed on improving medical training i.e. getting the doctors and nurses informed before they face patients. I wonder how big that primary care clinician support program (ECHO) is.

COVID-RELIEF Project

My sense is of some reasonable initiatives, but it's all very piecemeal, small and preliminary. Also, a lot of things that are Long Covid are now being counted as ME/CFS effort. Which is fair enough I guess, but the combined effort surely needs to be much bigger than this. Where is the national effort on accurate coding so that the size of the problem can really be seen? Where is the CDC's effort to prevent more people getting LC-ME/CFS?

If anyone from the CDC reads this, it would be great if they could include hyperlinks to the research and webinars that they mention in their pre-meeting transcript. It would save people a lot of time hunting around for research, given that they often don't give very good identifying information.

 

On Dr Satish Raj's presentation:

It was an interesting presentation. I think it's worth a listen by anyone interested in orthostatic intolerance in ME/CFS. He comes across as trying his best for his patients, and engaging in research to try to answer questions about treatments.

Dr Raj distinguished POT(the symptom) from POTS (the syndrome). He notes that POT occurs in most people when they have a viral infection. I think that's a really interesting observation. Why does that happen? Is it part of the engineered sickness response, to get people fighting an infection to stop, lie down and direct energy resources to getting well? How does it work?

He also notes that fatigue tends to be ubiquitous in people presenting with POTS, even if they don't meet ME/CFS criteria.

He said that POTS isn't really a fainting disorder, people just feel very unwell. He said that in a recent tilt table test study, more POTS patients completed the test than controls did. They felt really bad, but they didn't faint, perhaps because the tachycardia was compensating/responding to the physiological challenge.

There was an interesting section on whether patients with POTS are more anxious than normal. Dr Raj's wife is a psychiatrist and she she looked at this question. She found that the POTS patients were more anxious than the healthy controls, but they weren't more anxious than the population in general. She found that the healthy controls in the study were actually hyper-mentally well (or I guess at least reported being so). It could be worth finding that study, Raj et al 2009. It's a good point to remember - there is selection bias in the controls as well as the patients.

Dr Raj noted that a diagnosis of POTS is like a diagnosis of a fever - lots of causes, and the right treatment depends on the cause. Doctors should be trying to find the cause.

Okamoto 2012 study - looked at the overlap of POTS and ME/CFS - and found a substantial overlap.

Garland 2012 study - looked at the effect of salt. Dr Raj says that the study found that a high sodium diet did increase plasma volume, reduced plasma norepinephrine and decreased standing heart rate. There was a trend to reduced symptoms. He recommends it to his patients.

Bourne et al 2021 and a new one Bourne et al 2024 - looked at the effect of compression garments. Found they do work, especially garments that compress the abdomen, where most of the blood pooling occurs.

He also mentions exercise as useful, especially recumbent exercise. And also that there are medications.

He says that all of these are management tools that can help, even perhaps help a lot, but they are not cures.

 

Maybe because patients have had experience with and practice at managing POTS? They are better at reading the somatic signs, and judging how far they can push it before needing to sit/lie down?