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

Dakota15 said:
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
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Thats interesting. Thanks for sharing. Not knowing the background of your conversation @Dakota15 did you receive this reply as a helpful pointer and thoughtful engagement on how sick people can help themselves by begging the correct bodies, or a shirking of his own bodies responsibilities?
 
Hutan said:
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.
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As disappointing an answer as it might be, I maintain that pharmaceuticals have a huge interest in being involved, and not in the future, now. This is an illness that anyone can develop at any age, is obviously treatable, given that spontaneous recoveries happen, and is not about to go away, as long as infectious diseases exist this will be around. Which may as well be as long as people exist in our natural bodies. And this is just as true of ME/CFS as it is of dysautonomia, POTS, IBS, and the host of other problems we see in Long Covid.

It already has tens of millions of sufferers, and likely millions of new clients per year, who will develop a short-term form of the illness and recover from it. There is a business in line for people who don't want to be ill for weeks, let alone months, especially when there is no way of predicting any individual course, if they could be in the unlucky ones who don't recover. Most people suffering from this for 2 weeks will want it, and insurers will cover it if it means getting people functioning again.

Speaking of: https://www.modernatx.com/en-US/media-center/all-media/blogs/long-covid-awareness-day-2024.

It's a bit iffy, it cites a "study" for the graph below, but really is a Statistics Canada survey (still valid, but not a study):

image
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Still, any pharmaceutical executive looking at the business potential here who doesn't see it isn't worth a damn. It's probably more of a question of waiting for the basic science to have a better grasp on possible treatments, but this is a gold mine. The NIH can definitely do more to encourage this, though. But I wouldn't be surprised if this is where a solution comes from.
 
Ash said:
Thats interesting. Thanks for sharing. Not knowing the background of your conversation @Dakota15 did you receive this reply as a helpful pointer and thoughtful engagement on how sick people can help themselves by begging the correct bodies, or a shirking of his own bodies responsibilities?
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I'm still analyzing that reply and guidance, to be honest.

Also for those curious, I believe this is the ALS platform trial that Nath is referencing to mimic with ME.
 
Hutan said:
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.
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So triggering. Glad I did not watch. In fact I prefer to disappear for the whole awareness month.
 
duncan said:
No. In most cases, it is not.
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Treatable doesn't mean we know how to treat it, it just means that it can be treated, there is nothing permanently lost or unfixable here.

People recover after years of illness. It's rare, but it is possible to treat it. Knowing how is a different issue, but we are not stuck like some diseases where even finding what's wrong changes nothing, because it cannot be affected.

Then again, over time there will be plenty of untreatable diseases that will become treatable, but that's still a different issue.
 
rvallee said:
Treatable doesn't mean we know how to treat it, it just means that it can be treated, there is nothing permanently lost or unfixable here.

People recover after years of illness. It's rare, but it is possible to treat it. Knowing how is a different issue, but we are not stuck like some diseases where even finding what's wrong changes nothing, because it cannot be affected.

Then again, over time there will be plenty of untreatable diseases that will become treatable, but that's still a different issue.
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Potentially treatable
 
At the end of the NIH conference about the intramural study Nath said the following:

Time: 5:31:25
"The problem is now is that if you were to now study one compound after another, I think we would be here for… I think it would take us a century or longer to be able to go through this list. Our lifespans are short and mine is shorter than a lot of you. So what we need to do is come up with other innovative ways of being able to do trials.

One way is to do what is called platform studies. A platform study is one in which you can study multiple drugs simultaneously and compare it to a single placebo arm. Let’s say you have 5 arms in that study, and you have once placebo, that means a patient’s chance of getting a placebo becomes 1 out of 6. That’s an advantage to them. And you can compare and contrast these multiple drugs all at the same time. That’s impossible to do at a single site. So you’re going to need multiple sites in order to do these kinds of studies. But that is one way to be able to get to a quicker answer.

Another way is to do crossover studies. That means patients are put on a single drug – they could be on multiple drugs too in multiple arms - but then they have an opportunity, after they finished one arm, to move on to the next arm. So that way, every person who was on placebo has an opportunity to move on to one of these other arms. So there are these cross-over designs that also can be very informative."
 
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The CDC's informational webpage about ME/CFS seems to be rewritten or at least restructured. I don't know to what extent it has been edited and how much new material has been added (or old stuff changed). At a click glance, a lot has remained the same in essence but again, I haven't checked it all as it is a lot. I remember there was a section about severe ME/CFS that I can't find right now but that may be simply due to the restructuring and it may still be there, I don't know. What I have definitely spotted as a new addition is this part for example from the "Causes" chapter: "In addition, people have reported ME/CFS-like illness following the COVID-19 infections, called Long COVID."

In addition, if you used the CDC as a source/reference online, the link may be dead now, so you may need to update it (they are definitely dead on my website, so I'll need to go over these now).

Edit: Covid also has been added to this list of infectious triggers in the section for healthcare providers:

"ME/CFS-like illness has been described following infections with a wide variety of diseases. These include:

  • Epstein-Barr
  • Ross River
  • Coxiella burnetti (the cause of Q fever)
  • Herpesviruses
  • Enterovirus
  • Rubella
  • Candida albicans
  • Bornaviruses
  • Mycoplasma
  • Retroviruses, and
  • SARS-CoV-2 (the cause of COVID-19)"
 
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CDC said:
Covid also has been added to this list of infectious triggers in the section for healthcare providers:

"ME/CFS-like illness has been described following infections with a wide variety of diseases. These include:

  • Epstein-Barr
  • Ross River
  • Coxiella burnetti (the cause of Q fever)
  • Herpesviruses
  • Enterovirus
  • Rubella
  • Candida albicans
  • Bornaviruses
  • Mycoplasma
  • Retroviruses, and
  • SARS-CoV-2 (the cause of COVID-19)"
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Wessely-biomarker-rehabilitation.jpg

wessely-me-fake-illness-7.jpg
 
This meeting took place in 2021 so probably not of interest to many people but I don't recall seeing this information before (but I could be wrong).

Summary of Third Roundtable Meeting on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
October 12 and 14, 2021*
https://stacks.cdc.gov/view/cdc/156082


Attendees for 3rd ME/CFS Roundtable Meeting and Stakeholder Call
https://stacks.cdc.gov/view/cdc/156078
 
From Aspen Idea Health Conference (6/21)

Q: "What is CDC's role regarding Long COVID?"

(44 min mark) Cohen: "Obviously, we have learned a lot about the impact of viruses and frankly, we're learning so much about what we don't know in terms of our own immune systems - why do some people get so sick, and other people aren't impacted as well? Why does some people have a one week course and others have months and months and months of ongoing persistent symptoms?

We've made a huge investment across HHS related to Long COVID, a lot of that is basic research that's being done by NIH. Dr Rachel LeVine who is here is leading that work for the Department - out of the Office of the Secretary, because it is important that we do it not just from CDC, but across. The most important thing I want to continue to reiterate, is getting vaccinated. Vaccination reduces your likelihood that you are going to get Long COVID. Those are the important links we're trying to make for folks.

I'll just say on a personal note, someone - one of my very, very - close, close friends has Long COVID - is still struggling with Long COVID. I know it impacts many aspects of her life - so I see it personally. It's something that's very much on our mind." [FYI @Hutan]

Also makes sense for the semi-recent impassioned plea for vaccination w/Bloomberg Talks Podcast (3/4), given her close friend's struggles: "..I just wanted to make sure that folks knew...that will save people's lives & frankly reduce the risk of long covid.."
 
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