Chronic Fatigue Syndrome Support Group

I read your journal! Thank you for sharing! I know you are going to write more. It seems that they gave you a basic explanation of what CFS/ME is, but not very much information on how they are going to help you with it!!

I understand that you feel a bit overwhelmed with all this information. Don't try to understand everything right now. Just take it one day at a time. I'm really interested in what their plan is for you....besides trying to stay calm!!!

Thanks again for sharin!! xox

Coconuts, I read your journal entry, thank you, but I am dying to know anything and everything else they told you. You could spare some of us a lot of expense and travel! I had hyperthyroidism from goiters on my thyroid for over 7 years before they were found and treated. The way the doctors explained that to me is exactly how they explained CFS to you. I was in overdrive, my body running at max and then I crashed, but my thyroid was still causing my body to be in hyperdrive. Now, I have CFS and the same thing is going on?? On top of that, I had the most stressful job imaginable ~ like being in a war zone. How long will it take for my body to repair? :(

Thanks for sharing and get some rest!

Darla, I have TONS more info just hard to get out of my head, so hang on when the brain waves are working right I will get on it! The calming of the response was the best over advice I wanted to pass on while I entered 'brain-fry' mode!
EM, the 2 are close so do some research so that you understand it, the fight or flight response is a whole chain reaction type of thing, thats where all our symptoms come from....I really dont have answers for these things or I would be the greatest doctor ever! haha! I do know that your job only "fed" that..your job was the bear!
It will take time to repair but week by week it can happen....so Ive been told ;)

Interesting.
"Anxious" to learn more. (I know, not funny.) Makes sense. Im sure it is a large factor in my CFIDS. Ive always lived at a higher level of anxiety and had a go go personality. Is there maybe a report of what you learned posted somewhere? K

The info Mayo gave you about 'fight or flight', 'turn on calm', etc. is not accepted theory at all in the ME/CFS patient, patient advocacy and/or research community. It's basically a convoluted and nicey-nice way of saying that you have an anxiety disorder and there's nothing physically wrong with you, which is again not the case at all. It's pretty much about simple medical and/or diagnostic incompetance as a result of diagnosing people with anxiety disorders, which can have fatigue as a symptom, as having ME/CFS and inappropriately treating ME/CFS as an anxiety disorder.

Here's how you can test whether what they told you is a valid theory- do whatever it is that they want you to do for however long they want you to do it for. Calm down, think happy thoughts, sing kumbaya, whatever. Then go lift some weights, do some strenuous yardwork, etc. If you feel like you got hit by a ton of bricks after the exertion then obviously the theory that was pushed on you was complete hogwash. If you never felt like you got hit by a ton of bricks following exertion to begin with then you never really had ME/CFS in the first place.

Here's the Mayo Clinic's basic philosophy of what ME/CFS is and how to treat it- http://www.guptaprogramme.com/mayoc...

It's basically the same thing as Reverse Therapy, Mickel Therapy, the Lightning Process, etc, which are all based on and are 'branded' forms of NLP, often with a pyramid scheme attached where people who go through the 'training' can then become practicioners themselves and sell 'trainings' to others.

http://en.wikipedia.org/wiki/Neuro-...

The whole thing is based on the treatment of anxiety disorders and simply relies on the misdiagnosis of people with anxiety disorders as having ME/CFS due to ignorance regarding what ME/CFS actually is. From what I've read, a lot of the courses literally involve putting a mat down on the floor and whenever you feel anxious about something, going and standing on the mat and shouting 'stop'! There's other tricks and/or techniques that are used, but that basically gives you an idea as to what kind of approach it is. It's not based on helping you feel better or learning to live with your illness, it's based on 'curing' the patient of their anxiety disorder, which in this scenario is being misdiagnosed as ME/CFS.

One other thing is that if you don't improve with these therapies then it's your fault for not being 'open enough' or because you weren't 'ready to accept the treatment' or 'didn't apply the techniques adequately' or whatever. In short it says that if you don't improve (dramatically) then it's because you didn't try hard enough. It's basically a bunch of dangerous snake oil bs being offered to vulnerable and/or neglected patient groups.

http://en.wikipedia.org/wiki/The_Li...
http://iancleary.com/?page_id=16

Coconuts - I'd love to hear more too, when you are up to it.

Here's how it was explained to me when I was getting consults with the Clymer Healing Center. They seem to feel CFS is based on adrenal fatique/exhaustion. Even Teitelbaum says 2/3 rds of us have adrenal issues.

Anyway - if our adrenals get exhausted we do get stuck in flight or fight. Our immune system gets screwed up too also because the body shifts to the the sympathetic nervous system from the parasympathetic nervous system. With this imbalance there is more empathsis on autoimmune attack rather than the immune system doing its job of attacking invaders. It is the adrenals' job of bringing this back in balance, but it can't because they are dysfunctional at this point.

With the sympathetic nervous system overactivated/overstimulated all the time we are in fight or flight. The HTP axis remains stimulated. The parasympathetic nervous system keeps things in balance & allows us to rest & digest. Exactly what doesn't happen when we are in fight or flight. Then our immune systems get hit - candida, viruses, etc. say Yipee! we can take over here. Plus our digestive systems don't function properly - not enough digestive enzymes, etc. And our bodies don't want to rest because they are in fight or flight, being alert to dangers.

So the key for a lot of us is to get the adrenals rebuilt & to figure out what caused the adrenals to get exhausted in the first place.

Clymer uses nutrional supplements, adrenal glandulars, and licorice to build up the adrenals and seriphos to calm the adrenals. They also suggest having as little stress in your life as possible - meditating, not watching the news, etc. Also getting food allergies & sensitivities under control since they are a stressor. Also supplements for better digestion which will help with the food allergies.