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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFS is a metabolic condition!

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
But that's the personal choice of some, and both some patients and some doctors have trouble putting exercise completely on the back-burner until someone is sufficiently recovered enough to handle it without there being a significant trade-off with daily functioning. Klimas might have a mild tendency in that direction, but it is strongly tempered by insisting on using heart rate to set an upper limit.

So while her approach requires constant warnings and clarifications, it's probably pretty harmless if pain, PEM, and other symptoms are also used to indicate that activities must cease. It's also easier for non-ME specialists to accept that sort of approach - NIH, CDC, and most mainstream doctors probably can't comprehend that exercise is flat-out harmful for us, but they could probably accept that exercise is possible within strict limitations which exclude most of us from doing it :rolleyes:

I suspect that most doctors earn a comfortable-enough living so can't imagine patients not being able to afford to hire people to provide domestic services, etc., so that they can do some kind of formal exercise.

For many of us that choice doesn't exist. There IS no one else to do the essentials - so we have to, which uses all available energy - indeed more energy than is really available. Just the essentials can cause PEM and prevent recovery.
 
Messages
37
Chronic Fatigue Syndrome is not one illness in some it's low level radiation injuries undiagnosed plus some have different forms of auto immune conditions I have heard numerous numerous times that Herpes viruses involved but that has never been proven whatsoever anti viral antibacterials have anti inflammatory properties as soon as I read this post I knew he was not recovered especially when he says relatively symptom free I wonder how many 10 mile runs he is able to do daily I would like to see his treadmill reports from cardiology...There is not a blood test for so called CFS everything is speculations there are now too many sites with different labels all across the web now from Lyme to histamine intolerance to mold to funguses to herpes viruses the list of b.s. goes on & on & on Garth Nicolson decades ago said it was 45% of the HIV virus envelope now Nancy Klimas says you can exercise yourself back to health when does all the b.s. stop now


Well... I'm a she. I never said I was recovered, I said relatively symptom free. Enough so that I was able to care for my father the last three years of his life. I even managed to take him on a three week trip across country. He was a large man, over 6 ft, and over 200 lbs. He fell often and I was able to get him up.

I don't run; I've never liked running because it hurt my back. However, I'm considering taking it up - I'm feeling that good. I'm only feeling this good because I've been working out, more or less, for the past four years and have strengthened the muscles that hold me up. I have had three minor flares in the past 2 years - nausea, dizziness, fatigue, random pain...

My heart is doing really good. Back in the late 90's, my doctor diagnosed Cardiomyopathy and I even took drugs for it, for about 3 months. I started taking Co Q 10 for my gums because my dentist wanted to do horrible things to me. The gums were spared (amazing difference in only 1 month) and 3 years later, another doctor sent me to a cardiologist who ran all the tests and said my heart was in amazingly good shape for my age. No sign of any cardiomyopathy. On the way home, I learned about a study that showed Co Q 10 regenerates heart and gum tissues.

I've always believed that ME/CFS/Fibro were trashcan diagnoses. (maybe not the ME so much) If a doctor can't figure it out, he lumps people together. Usually, when lumps get really big, they start to sort. P
 
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Good question, knackers323. I don't think he believes it's all the same thing. He only diagnosed me after the usual blood tests showing the Cytomegalovirus, Epstein Barr, etc... Then he said he thought I would respond best to the Valtrex with CoQ10. He mentioned two other possible treatments but settled on the one. He also looked at my list of supplements and was pleased a few were on there but I can't remember which.

My last comment got cut off a little. I ended with something to the effect that perhaps PWCFS is many illnesses lumped together. and that my lump is most likely HPPV.

As for my speculation that he's also inflicted - he's so flakey and has low energy - but he's also over 70 so I couldn't say either way. He told me I may never be cured but that I could get the upper hand. I HATE CFS.
 
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37
I think it's important to encourage everyone to exercise some. It's really hard to get through to chronically ill people because their lives are so impossible. I remember getting upset at anyone who told me I just needed to get back to working out. (I used to be super athletic B4 CFS) I think modern medicine rejects the very things that will help the afflicted because it's just too expensive and you know... we're not dying...

If I were King, everyone would have a housekeeper come in once a week - and someone to massage my feet.
 

jann1033

Senior Member
Messages
176
My dr has an interesting theory as to virus and CFS. Personally my virus titers have fluctuated over the course of CFS. Her take is in reality the latent virus has no connection except for the fact that exacerbation of CFS allows it multiply due to immune problems. That could account for so many different viruses being blamed as a cause. They aren't a cause but an effect.
 

lansbergen

Senior Member
Messages
2,512
Her take is in reality the latent virus has no connection except for the fact that exacerbation of CFS allows it multiply due to immune problems. That could account for so many different viruses being blamed as a cause. They aren't a cause but an effect.

Yes, just opportunists
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I think it's important to encourage everyone to exercise some. It's really hard to get through to chronically ill people because their lives are so impossible. I remember getting upset at anyone who told me I just needed to get back to working out. (I used to be super athletic B4 CFS)

Yes, exercise is a tricky thing for ME/CFS patients. While it is very helpful at a certain stage, it is virtually impossible for those who are bed-bound and unable to even toddle to the bathroom. Even simple exercises like raising and lowering limbs or stretching can have severe consequences for those who are this severely afflicted--even if they can manage this, and many can't. :(

What I have found, for myself, is that when my physical condition has improved a notch or so, I do benefit from a level of exercise that doesn't give me "pay-back" or PEM. If I get PEM, I have overtaxed my body and actually done a bit of damage. So for me, the improvement has to come before the experiment with exercise.

Many of us are doing this dance--testing the exercise waters carefully to see what we can manage without pay-back. The difficult thing is that this can vary from day-to-day so we are always somewhat "on the edge" in relation to exercise. But for many here, experimenting with exercise is just not worth the inherent risk.

Sushi
 

knackers323

Senior Member
Messages
1,625
Many, many times. Then they filed the tests away, calling them inconclusive. Doctors have not wanted to have a clue about CFS/Fibro for decades.

Unbelievable. You had only low level titres then? Were they IgG or igm?

Hi @jann1033 she may be right but it sounds a bit unusual if it is that virus that first started the cfs symptoms.

What does she think is the root cause of cfs is? Thanks
 
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37
So... just wild speculation/brainstorming in the middle of the night... Something in our metabolism is malfunctioning so that it allows more viruses to attack??

Here's the thing that gets me, after over 30 years dealing with this monster (my mother also suffered from this and, I'm sure, went to an early grave because of it), why are we still so clueless? You'd think we'd have come up with SOMETHING by now.

Something is causing our systems to go haywire... break down... short circuit.
 
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37
That's HHV (Human herpes virus), e.g. HHV-6.

Oh dear... I don't know whether to laugh or cry... That was a silly mistake. Thanks for telling me MeSci and not calling me stupid. I really, really appreciate that.

I get episodic cluster headaches and I'm maybe, hopefully at the tail end of my most recent episode. (It had been 3 years since my last episode) The thought process interruption is so bad - worse than any mental fog I've experienced before.
 

jann1033

Senior Member
Messages
176
Unbelievable. You had only low level titres then? Were they IgG or igm?

Hi @jann1033 she may be right but it sounds a bit unusual if it is that virus that first started the cfs symptoms



What does she think is the root cause of cfs is? Thanks

She doesn't know, she figures it could be a virus that initially throws the switch but doesn't necessarily feel that is the ulimate cause. Something else could be happening to make our bodies react or overreact to that particular virus we got, rather than it being that particular virus that xauses the C F S . That does make sense when you think how some never got a virus before hand.
That is refreshing in itself to me since the last one i saw said it was childhood stress lol! I love her though. She looks at ME/CFS as a challenge, not a failure of her intelligence so i think she may ultimately be able to help if anyone can.

Her take, which i can kind of understand, is until someone proves what causes it you can't really do much about that so treat what you see is going on. For me that is better as i tend to react strongly to a lot of meds so the constant trial and error is not good for me( that predates the CFS, my mother ,sister, and daughter are the same way)