researcher receives $1.5 million NIH grant to evaluate daily activity patterns and heart rate...

[Groggy Doggy]

This observation can be interpreted a couple of ways. One way is saying they don't think ME/CFS involves the heart. Period. They allude to cardiovascular aging, but...eh?

Another is that it can happen, but the likelihood that it will is low. Similar to the concept that Lyme affects the heart - it can and does happen, but the relative incidence is not that high, so it is unlikely for most people who contract Lyme to have cardiac involvement. (But it can kill ya if it does...)

So, not clear here on the context of this quote.

But I have to agree with @Justin30 , this seems odd with POTS or NMH or low blood volume (heart would have to pump harder, etc.) associated with ME/CFS - it seems the heart IS involved to at least some degree in some pwME.

The heart is very much involved. And Cardiologists continue to push medicines that make us sicker. For a subset of us, lowering our cholesterol with statins can make us worse. So without their acknowledgement that there is a relationship between ME/CFS and heart disease, how are we going to get funding to study the long term impact of statins, and Calcium channel blockers on ME/CFS patients?

GD

 

[duncan]

Nods.

I seem to remember studies suggesting statins may present problems for people with cognitive and/or muscle issues. But I'm pulling that from memory so take it with a barrel of salt.

Geez, so many of our conversations seem immersed in inadvertent irony.

 

[PennyIA]

That's not how NIH funding works. They have not funded much ME/CFS research to date, true, but there is no limit of $5m a year. I'm pretty sure we're at the beginning of a big upswing in funding, and before an RFP is announced, creative people inside NIH are finding other ways to boost funding. (Like pointing IACFS/ME to a grant that can be used by young investigators to travel to their conference). The point is that it is not a zero sum game, and funding Frieberg here does not take away funding from other research.

I wasn't calling out just NIH funding methodology... I'm talking about a slice of all budgets from all sources from any agency internationally - there just isn't enough money being spent funding ME/CFS research... so seeing a pile of it going to look at this seems like we're not going to gain as much as we can if the funds are used where we'd like to see them go to.

Now, I do sincerely hope that there will be a big upswing in funding... I'm COUNTING on it because honestly without that, there's not a lot of hope for a chance at effective treatment for me. I'm turning 50 and have been ill for over 10 years and honestly, things aren't going to get any better for me without effective treatment.

BUT, if we have a big upswing of funding and the money is used for figuring out how to help us cope? Well, that frankly sucks. .

 

[PennyIA]

Agreed. What would be better?
...
I used to think that research was what we needed to change minds. It's evidence, and, we were told, evidence was what was required in order to take the disease seriously. Well, although we still get tons of psych CFS research, we've sure had a bunch of high-profile stuff in the past couple of years. Has it changed minds? Well, gee--is it a coincidence that we've now had at least 8 deaths in the past two months alone (not that we can automatically assign cause of death to ME in all of those cases, but come on)? Have many minds changed when we know that patients still have miserable experiences with medical professionals on an ongoing basis?

We need bigger, reproducible studies on the biomarkers that may already exist and the ones that folks are already hot on the trail of.

Any one-time study result that isn't reproduced or has too small a sample isn't enough on it's own right. Once we can reproduce the results on bigger studies? THEN even the naysayers are going to have trouble arguing the point.

Admittedly, psychotherapists have their own ability to twist things around... which is part of my concern about the study for biomarkers among looking at heart rate monitor and activity logs.

 

[Snow Leopard]

Two Stanford MDs "found that the heart is unlikely to be affected by ME/CFS". Francois Haddard, MD is a cardiologist that collaborates with the Stanford ME/CFS clinic. Mehdi Skhiri, MD, is Internal Medicine

http://med.stanford.edu/content/dam/sm/chronicfatiguesyndrome/documents/CFS Montoya Newsletter Spring 2016 FINAL (1).pdf

View attachment 16186

It's not the heart itself that is the problem, but cardiac autonomic control - there is also speculation that the heart rate response curves seen in ME patients when experiencing PEM seem to be similar to that of athletes who are severely fatigued after ultraendurance events.

 

[Groggy Doggy]

It's not the heart itself that is the problem, but cardiac autonomic control - there is also speculation that the heart rate response curves seen in ME patients when experiencing PEM seem to be similar to that of athletes who are severely fatigued after ultraendurance events.

The heart is not isolated from the rest of the body. I think sometimes specialists get too focused on their area of study and miss the big picture. So if the body is not functioning correctly, the heart can show a symptom of that dysfunction. In the process of trying to treat a ME patient with a heart issue, an Rx(s) can be prescribed (with little to no knowledge of the impact); will this make ME worse, better, have no impact? What if the ME patient has heart surgery; will this make ME worse, better, or have no impact? There are too many unknowns and not enough research in this area. I don't think we can 100% rule out that a medication or combination of medications are a contributor to a patient getting ME or maintaining ME. Or can't rule out that medications plus a surgery are a contributor to ME or maintaining ME.

It's like working in computer software. In the process of modifying the code, to try to fix a software bug, more bugs are introduced.

We are 30 years behind in researching ME, and IMO there are too many unknowns of the impacts of trying different interventions to help with symptoms. And we don't understand the triggers that got us sick in the first place, and what is keeping us sick. Researchers can find things that are suspect in ME patients, and will most likely continue to find more things, but what is the underlying root cause? And why did that underlying root cause pop up in our lives?

Yes I agree to an extent, that for some of us the heart (as viewed as a pump) is not THE problem; it's a symptom of ME.


My mind is getting foggy but hoped I addressed your post. If not, I will look at it later.

 

[caledonia]

The heart is very much involved. And Cardiologists continue to push medicines that make us sicker. For a subset of us, lowering our cholesterol with statins can make us worse. So without their acknowledgement that there is a relationship between ME/CFS and heart disease, how are we going to get funding to study the long term impact of statins, and Calcium channel blockers on ME/CFS patients?

GD

Statins are very bad for the mitochondria.