An Update on ME/CFS Research with Ronald W. Davis, PhD

[Denise]

I could be wrong but I think dysautonomia and CFS are one in the same. Some people present bigger pulse and BP changes on a tilt table than others. Just like some people with CFS are bed bound and some are able to hold a job.

I am not sure I follow why you think dysautonomia and cfs are one and the same. (I am also not sure if you are referring to cfs or ME.)
If dysautonomia and cfs are the same, wouldn't treatments such as beta-blockers, midodrine, florinef, etc. help all patients?
Those treatment help some patients, with dysautonomia who have a cfs (or ME) diagnosis, but they do not help all of them.
Also some people with dysautonomia can exercise and improve, while patients with ME cannot exercise without worsening of symptoms and function.

 

[eljefe19]

Is it truly the case that PWME cannot exercise at all without worsening symptoms? I seem to be able to get away with some light weights every now and then. Florinef is a great drug IMO and has really helped smooth out the push crash cycle for me. I'm intrigued by Midodrine as well. Also, saline infusions are some of the best palliative measures for me personally, I'm wondering if any of the dysautonomia drugs work similarly to saline infusions? Anyone?

 

[M Paine]

Is it truly the case that PWME cannot exercise at all without worsening symptoms? I seem to be able to get away with some light weights every now and then

It depends on the patient, and the severity of illness. If you are recovered enough, then sure.

Generally speaking, the recommendation seems to be to avoid pushing aerobic respiration. Weight exercise with a few minutes in between reps to bring your heart rate down seems to work for me. It's funny, I can spend two hours doing weight exercise this way without PEM now, but 2 minutes on a treadmill would wreck me. Don't expect to gain much muscle, stick to well under you maximum weightlifting capacity. Know your limits, don't push yourself. Don't exercise with any symptoms of PEM. It's really easy to overdo things, the hard part is forcing yourself not to.

 

[Barry53]

It depends on the patient, and the severity of illness. If you are recovered enough, then sure.

My wife can walk a fair distance within her own limits. 1 to 2 miles, albeit very slowly with lots of stops - 2 hours or so. She suffers later, but better than she used to be. It is part of what helps keep her spirits up. These last couple of weeks, things have unavoidably been a bit more demanding, and the effect definitely shows, needing to just "collapse in a heap" at certain intervals.

 

[Sing]

It is tough to hold back to stay inside limits! If these limits only stayed regular, or if life's needs only stayed even, this discipline would be a lot easier to accomplish. Even when doing what I understand to stay inside limits, I still find I overdo it on something. Something will involve speed, intensity, noise or some kind of exertion. Often this involves trying to match other people's pace or style to be in good communication with them--and then there are the crash days which follow. I am better off than the severely ill, but still in a very strange place in relationship to other people, my past abilities and current interests. Whatever discipline I can apply, more tends to be needed.

It is so paradoxical that an illness which causes so much impairment and dumbing down requires so much intelligence and resourcefulness to manage. I am always impressed by my fellow members here, what you try and what you manage to do. I thank you for your many efforts in helping the rest of us, even as you seek help yourself, to manage and to understand the strange condition that we have. Thank you for being here!

 

[eljefe19]

@Sing It's almost harder for us moderate CFS people to explain it. We appear to be normal enough even to our closest relatives and friends that they cannot understand how debilitating it can really be.

 

[bertiedog]

It's almost harder for us moderate CFS people to explain it. We appear to be normal enough even to our closest relatives and friends that they cannot understand how debilitating it can really be.

I couldn't agree more, this is my experience too. The problem is that when I am in bad crash due to virus/infections nobody understands how ill I am feeling at that time and when like this I don't recover like they would from a simple respiratory virus. It's so frustrating!

Pam

 

[A.B.]

The moderately affected come across as lazy and not really trying hard enough.

 

[AndyPR]

The moderately affected across as lazy and not really trying hard enough.

I would argue, as someone who has moved from mildly to moderately affected, that those who are mildly affected aren't exempt from this sort of judgement - during education and then, while still 'only' mild, my working life, I had numerous occasions where, in one way or another, people expressed the opinion that I wasn't pulling what they considered to be my own weight.

 

[duncan]

Is it truly the case that PWME cannot exercise at all without worsening symptoms?

Perhaps "exertion" is a better word? This way it would encompass emotional and intellectual efforts. For instance, in my case, the PEM toll from anger or grief, or mere intellectual concentration in doing something like complex Math or trying to decipher an in-depth study, will elicit devestating PEM quicker and longer lasting sometimes, than overdoing things physically.

 

[Barry53]

@Sing It's almost harder for us moderate CFS people to explain it. We appear to be normal enough even to our closest relatives and friends that they cannot understand how debilitating it can really be.

I can agree with this from the other side of the fence. It has taken a considerable time for me to properly understand that if my wife sometimes gives the appearance of being a bit peeved about something (I tend to presume it to be me!!), it is actually/usually because she is feeling ghastly and utterly washed out, and that is just the way it comes across.

 

[Denise]

Perhaps "exertion" is a better word? This way it would encompass emotional and intellectual efforts. For instance, in my case, the PEM toll from anger or grief, or mere intellectual concentration in doing something like complex Math or trying to decipher an in-depth study, will elicit devestating PEM quicker and longer lasting sometimes, than overdoing things physically.

I agree that any sort of exertion - physical or cognitive can bring on PEM. Like you, I have noticed that PEM resulting from cognitive exertion can be more profound than PEM from physical exertion.

And as @Sing noted - the exertion limits are constantly shifting, so it is extremely difficult to avoid PEM.

 

[duncan]

I agree that any sort of exertion - physical or cognitive can bring on PEM. Like you, I have noticed that PEM resulting from cognitive exertion can be more profound than PEM from physical exertion.

And as @Sing noted - the exertion limits are constantly shifting, so it is extremely difficult to avoid PEM.

I feel like I've developed Attention Deficit Syndrome since becoming sick, and that in a way, it's a boon - almost a defensive mechanism.

 

[Barry53]

I agree that any sort of exertion - physical or cognitive can bring on PEM. Like you, I have noticed that PEM resulting from cognitive exertion can be more profound than PEM from physical exertion.

This seems sensible. Thinking has a relatively high power demand - consumes energy relatively quickly ... and if there is precious little energy supply available ...!

 

[Yabisa]

Yesss.
Its one of the neurological or cognitive sympthoms.
I teach pupils with special needs ( hiperactivity, attention deficit, autism, Down S. , learning disabilities ) and I've been really conscient of many of my cognitive impairments.
Even more. I told the neurologist and He didn't trust me. When I had the results he asked me what did I think about it.
He was surprised because the impairments I told him were right.

I have never returned to him .

 

[Yabisa]

I couldn't agree more, this is my experience too. The problem is that when I am in bad crash due to virus/infections nobody understands how ill I am feeling at that time and when like this I don't recover like they would from a simple respiratory virus. It's so frustrating!

Pam

Explain them your energy limitations this way:
Think of a car that has arrived to the minimum fuel.
What would you do?
Run 120 km/h or slow down speed for not wasting that minimum fuel?
Same simil with low battery in the movile phone...

 

[Yabisa]

Something it happens to me almost each day teaching is that I notice a mental tireness if I talk continuosly.
I think this fatigability can be due to the lack of energy or oxigen in my brain

 

[GodGenghis]

Ron has figured out that whatever is in the serum that's triggering this is a big molecule, so it could be a protein, A protein complex, or an antibody (which includes auto antibodies)

This seems to suggest that the problem is something that is *in* the serum, as opposed to something that is supposed to be there but isn't.

 

[GodGenghis]

The best anybody can do for this community is to record this "healthy serum" vs CFS serum, this will bring on board every unbelievable or any doctor / doubting Thomas in the fence to our side.

As I understand it, Fluge and Mella have also performed similar serum experiments and haven't published them. Perhaps there is an opportunity here for an enterprising researcher to replicate this experiment and make an impactful publication while more established researchers focus on bigger fish.

More to that point, it would be nice to have a research group that is focused on replicating important studies.

 

[Barry53]

View attachment 19638

I saw a plumber much like this once. He had been working in a loft, and left his blowlamp momentarily pointing at his cigarette lighter! He looked a bit odd without his eyebrows.