Hi,

I know a little about this because I'm a pwc (person with cfs) who's trying to follow the current research trends. Dr Myhill in the UK, is the only dr I know of now who is testing for cfs mito problems. She has some great info on cfs.

Post exertional malaise (pem) is the term used by cfs reseachers to define the exaustion plus neuro or other symptoms for some pwcs a day after exerting themselves past their level of functionality. These levels vary. Some barely know they have it but I can barely get out of my house once every three days.  I suspect my oi (orthostatic intolerance ) / pots is causing my pem. And I suspect my oi is from a mast cell problem.

Pacific labs in ca tests pwcs for pem by having them do exercise
testing two days in a row. Anyone with pem can't exercise at the same level on day two.  If you google cfs pacific labs you'll find their info.

Imho tho dr peckerman's article on the affects of oi on our bodies gets to the root of what's causing cfs, pem and mito problems for some pwcs.   After eliminating most of the toxins from my diet and seeing most of my symptoms disappear, the fact that oi was keeping me couchbound was obvious. I feel healthy when supine as long as I'm not hungry.

Tc ... Marcia

Hi blueskies.

Sorry for all the abbreviations. I use my tablet most of the time so I try to keep my answers short. I just went back and added definitions tho.

Oi is orthostatic intolerance and is dx via a tilt table test. Basically this diagnosis means when you sit or stand up your hr and bp do wacky things. It doesn't include conditions where a person's hr and bp are wacky at any other time.  

The fact that someone's hr and bp aren't reacting normally only when upright points to vasodilation in some cases.  Vasodilation happens when mast cells are activated.

I'm not sure you're understanding pem.  It's apparent the day after exertion, not during. Fwiw, Were your mc symptoms under control the days you didn't get pem ? Watch for a relationship.  

I say this because when I first started mc meds I didn't have oi or pem but that faded.  But I got stupid and added my trigger foods back to my diet tho. And now I'm being careful again. Lesson learned.

For me pem always happens and lasts for 2 days. On the 3rd day I can get out of my house again and feel somewhat healthy for about an hour. It's downhill from there. Laying down while I'm out revitalizes me and helps me stay out longer tho.

No one knows exactly what chemicals are involved in pem. I'm not sure it matters tho if you consider dr peckerman's explanation of oi / hypoperfusion. If all of our upper organs are unable to function properly, the list of possible chemicals is impossible to track. And unnecessary.

So I'm hoping that stopping oi will stop pem. I've improved my oi with mc meds but not consistently.  I'm working on it tho.

Tc .. Marcia

Hi blueskies,

Sounds like pem to me. I have to spend the next 2 days after running errands on the couch resting. Any attempt to function is met with brain fog and uncoordinated movements.  I joke about being Gumby .. Lol

There is speculation that pwcs can't produce or recycle atp normally. Atp (adenosyl tri phosphate ?)  is created via the kreb's cycle.  Dr sarah myhill explains this.

There was a research paper recently on pheonix rising that linked oi to the most disabled pwcs.  Hopefully it's in their oi section.

I'm mentioning this because I've yet to see those blaming chemicals on cfs fatigue discuss oi / hypoperfusion.  

Since I feel healthy when supine, I suspect my cfs fatigue is just from oi but I won't know until I get my oi under control. Standing up is required to measure funtionality. Lol..  

Tc .. Marcia

Ps. Imho,  unless your symptoms are severe, most patients with oi only need to know the basics of oi / pots at this point because many (all ?) of the chemical reactions discussed are speculation / theories being presented as facts.  Imho, drugs being prescribed are entirely hit or miss and can cause more problems in many cases.

I say this because most oi specialists aren't up on mast cell info.
More are learning about gluten but from what I'm seeing they're getting not the whole picture and looking for possible causes.

Getting enough sodium is a good idea for anyone with chronic low bp. Staying hydrated is important too but fresh raw fruits and veggies are the best source. NOT gatorade, etc.

By basics I just mean understanding the poor man's tilt table test. Imho,  The data collected during the real ttt isn't helping patients.  I'd recommend doing self experimentation with a bp and hr monitor to see how your body is functioning.  

This is just my google educated opinion tho. I'm not a medical professional.  I'm a pwc on a mission.  

I'm a PWC too.  I started my 30+ year career in ill health after a bad case of mono., then transitioned to graduate school where I got my PWC.   I am currently working on my Mastos.  

Seriously, quite a number of patients with Chronic Fatigue Syndrome also develop symptoms of a mast cell disorder.   Phoenix Rising is a good place to research CFS, as mentioned.

I don't have a lot to add besides this.   Just wanted to say that I've seen this movie too.    

Todd in Tenn.