ME/CFS and PEMF

[Cat]

I’ve danced around the topic, talking about impaired mitochondria etc.

But the fact is, I have ME/CFS.

I’m much better than I was after discovering Raelan Agle and Toby Morrison on Youtube. I don’t follow a program. I use my money on this site instead. But just knowing that info helps me. It’s worth mentioning if it helps others.

Anyway, I wanted to talk about the good and the bad concerning ME/CFS and PEMF.

When I first got the M1, I had already used red light therapy for a long time, and I had never run up against any limits there.

Many do run up against limits. They need to be very careful about how much skin they expose, how long and how often. And although the severe is likely to have more of an issue, in the moderate and mild category, it’s not a 1 to 1 about who will need limits and who won’t.

So when I got the M1, I also picked up the flu on that trip out, during the worst of Covid. I never get a fever (fairly typical when having ME/CFS - either low grade fever almost all the time or never), but did then. I got it again during Covid a few months later.

I used the M1 on a bit higher intensity and longer than I’ve done later. I ended up with training soreness in my throat and chest. That’s rather dangerous, as with ME/CFS it goes from mild «sour» muscles (lactacte) or heavy body all over, to what I term training soreness, to actual paralysis when the mitochondria are all out of ATP (the energy molecule in the body) and unable to produce enough on demand as you go.

So PEMF is actually dangerous.

But it’s also fantastic if done right, just like red light therapy.

Bob’s company recommended I start with an A9. For ME/CFS that’s actually the wrong device. The M1 goes much further down in intensity. And the time you use is quite important, not just the intensity. So it’s important to have not only the possibility of using lower intensity but also having more latitude timewise before soreness sets in if you forget to take it off right away.

I found out that with intensity 1 and two hours I was safe (that doesn’t mean YOU will have the same limits). The cutoff for me was somewhere +/- 3 hours at that time. Later I realized I couldn’t get enough sites on the body that way, so I switched to intensity 2 and 1 hour per site.

I also found out early on that for me, red light and PEMF on the same site at the same time results in my mitochondria not cooperating for at least one week, maybe two. That was a hard lesson to learn. I’m no longer used to getting more and more stiff and more and more pain. I do not do red light and PEMF at the same time, but it seems I don’t have to wait a long time between sessions.

I’ve done 5 hours total per day a lot lately. Sometimes even more. And I’m butting up against a limit on how much time I have. So much so I have been thinking about trying the C5. And then one coil broke, and my spares got lost in the move. So I need at least one more coil. And I have a family member who needs the M1…

And then @lulu7 mentioned using the C5 with the mat and no complaints about soreness. And I realized I CAN use just one channel if my body can’t handle more. So if I buy that, I’m out money compared to the price of an extra M1, but not function.

I have a computer background, I do troubleshooting and A B testing and have excellent body consciousness, so I’m hoping we can exchange experiences and maybe learn more about using PEMF with ME/CFS.

I also have dry mouth that I know is due to inflammation. I found red light gives saliva then and there. So I had an excellent test case for PEMF. I’ve found that when I use PEMF pretty much every day as much as I have lately, I get more saliva when the machine is on, even when it’s far away from the mouth.

I have used the M1 under my left ear, because there’s a lot of talk about vagus nerve stimulation. I figure that has to be better than the other devices I don’t really understand. I don’t know if it’s doing anything specific, but it’s a good location for saliva.

I have found that stacked coils might go deep, but not that wide. I need to repeat the experiment with a coil that isn’t close to failing, but it seems I might not get all the lactate out unless I place them almost all over in the neck/shoulder area (computer neck). And that might be why I’ve felt red light was better until very recently. I use belts, and the bulbs are on an area. They will hit pretty much the entire area treated, so no cold spots. But I think red light and PEMF are actually doing some of the same stuff when it comes to mitochondria.

I just ordered the C5 with both the big 4 coils and the regular ones. Some places, such as my cranky hips (bursitis?) I need it to go deep, and on my shoulders on days I might not get around to red light, I need shallow area coverage.

So, anyone else with ME/CFS or Fibromyalgia or other autoimmune illnesses with fatigue or other types of fatigue where compromised mitochondria might be an issue? What are your experiences and questions?

[lulu7]

Hi Cat! I had lent my C5 out to my mom for many months, but since I got it back I’ve been sleeping on it for just about over a month with no problems. Since I’m post menopausal and on my back 90% weeks f the day due to ME and POTS/dysautonomia, I have osteopenia with a 30% chance of fracture in the next 10 years. But I convinced my doc I didn’t need to go on those osteoporosis meds with bad side effects if I tried PEMF on my lower back/pelvic area and tried a bit more weight bearing. So far so good with no adverse effects. You may be more sensitive to PEMF/ICES than I am, though. I use power level 9 with Bob’s pad, and I rotate it once a week through Omni 8, A9, C5, and P2 programs to prevent my body getting used to anything.

I also have dry eyes/dry mouth, but I have Sjögren’s syndrome (have you checked?). I have a full body red light that I try to do twice a week, and I think it helps. I also have HBOT that I haven’t done in a while because it crashes me if I do too much of it. I think I’ll restart that. Regarding lactate buildup, I find supplements can help. I take a ton of them daily, but specifically Ac-L-carnitine, carnosine, creatine, Mg, L-glutamine I have found helpful for lactic acid buildup.

Let’s keep each other posted on our experiences!

[Cat]

I know about Sjogren. I’m diagnosed with Sicca, and the cause is inflammation, which puts it into Sjogren territory.

There’s fatigue associated with Sjogrens as well. Some get PEM, some do not. If you can handle level 9 for a long time (more than one hour at a time), it’s unlikely your mitochondria are impaired. I’m not a doctor, and there are many things about ME/CFS that are mysterious. But this is not normal, unless you’re actually recovered and mitochondria are back to normal. And with an auto-immune illness such as Sjogren, and POTS as well, and mitochondria not impaired, that might even be some other kind of fatigue. Impossible to say with so little info, and I wouldn’t say it except other ME/CFS patients will be mightily confused with our two experiences.

I’m handling red light better than most patients I know of, and that might mean I can handle PEMF better as well. But level 9 for hours? That would lay me flat for minimum a week, and might be dangerous.

We need more data points. Yours is probably an outlier, but we need to see what others say.

[Cat]

I’ve got my C5 with 4 2x2. I got up to my regular time and intensity quickly. It appears my hunch the effect is sufficiently localized I can use a C5 was correct.

In the beginning I used the coils at my regular spots I used to use the M1 on.

Today I had a headache. Using red light pads is a hassle, and I decided to test the C5.

I put one on top of one shoulder, another on the other shoulder (but I think it slid towards my neck). I had one behind my throat and one further down along my spine. Placement wasn’t precise, but the headache lifted, and I feel better overall, which is something I’ve seen since I started using the C5.

So far I have not added a second session per day. I will soon.

My rule of thumb is to not overlap placement on the same day, and be careful with time limits. I use an alarm on my phone.

I can’t say everybody will be able to handle a C5. One person with ME/CFS got training soreness after 40 minutes at intensity 2, using stacked coil M1. The soreness didn’t last a week, though. That’s positive.

[Cat]

The person who got my M1 also has ME/CFS. She can handle 20 minutes, but not 45 minutes just yet. On intensity 2. I dropped her down to 20 after 45 was too much, to give her some headroom.