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Chronic Fatigue And Dinet Forums Poll


RichGotsPots

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I have been coming to this forum over 4 years now and mostly stayed away from CFS forums, but resently I was looking for some insight into my fatigue escalation problems and skimed through a large CFS forum. There seemed to me a really large number of dysautonomia people there so I was just curious if there is as large of a number of CFS here.

Recently the NIH recognized CFS and is advocating somewhat for more research in that area, which is neat and I think it coukd cross over toDysautonomia research eventually.

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Dear Rich and fellow readers,

Timely topic for me; I've been reading a lot about CFS/ME in the past few weeks.

Porfound fatigue is my most disabling symptom (life course right now?). However I know I have small fiber sensory and autonomic neuropathies. I only believe I don't have cfs/me because, so far, it appears I don't have an underlying autoimmune disorder or indications of one, either through testing or having joint pain, muscle aches, a precipitating virus...etc ....but as I said...so far.

Lately, I've also read more and more about cfe/me sufferers who have a slew of dysautonomia symptoms. Although I' not signed in on CFS sites, I did join a CFS support group here in NYC just last week. (Have not heard back).

Clearly there is lots of overlap, and also clearly there is next to no research funding for either disorder (I just read there are as many people in the US with CFS as there are people with HIV, yet the respective research budgets are something like 1.5 million vs. 3 billion!) Brian Vastag, who is a former Washington Post science writer with severely disabling CFS, is on the back of the NIH about this. When I think about the incredible strides in HIV treatment, it really hits home. (A treatment plan...now there's an idea!)

All of this is in a great Atlantic Monthly article (10/15... should be easy to google). Most exciting thing in article for me is how Vastag describes moving to a CFS community in Kauai, Hawaii. He even fell in love with another resident and says they are happily doing nothing together! I'm trying to find out more about it. I would love to have such company in a beautiful, warm setting.

To sum up, I think that placement in one or the other camp may be arbitrary at this point. Just as there are many types of dysautonomia, CFS may be a similarly broad "catch-all" diagnosis. I am also reading about "acute sickness response" that is characteristic of a lot of conditions aside from cfs (sarcoidosis, MS, etc): this term is the best one I've found so far to describe how I feel. The term is most often used when describing conditions where disease-fighting cytokines (things like hormones) attack our own cells. This is why I wish to have further autoimmune testing. (If anyone can write about cytokines in plain English, I would love to hear more!).

I feel that if my fatigue was not so crushing, I would see myself (and my future) in a very different way. It blows my mind how much I've changed in less than a year.

Thanks Rich for this thread. Lots to think about and discuss.

Sylvie

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Hi Rich,

I'm not quite sure how to answer your first question in that I do have chronic fatigue but am no longer sure about my previous CFS diagnosis which was given me a number of years back. That diagnosis never fully explained all of the issues I was having but it explained some of them and I was happy to have any diagnosis at that point. I certainly met the criteria for it and had the diagnosis confirmed by two different neurologists and two different rheumatologist. A short time later I was diagnosed with POTS. CFS and POTS diagnoses combined still did not explain all of my issues. Several years later I ended up with more diagnoses added on ( AAN, MCAD, SFN ) which better explained my symptoms. Now when I ask do I still have a CFS diagnosis in addition to everything else. I don't get a very clear answer. Because of this I do follow all of the latest CFS ( now SEID ) information. I read Phoenix Rising and other sites but have not formally joined a forum. For myself I wonder if mast cell issues are what is behind my CFS symptoms. Maybe my CFS diagnosis from all those years back was incorrect. I have no idea. I can't help but wonder if a number of people with a CFS diagnosis may in actuality have the wrong diagnosis. Fatigue and post exertional malaise though are by far two of my worst most debilitating symptoms so I will continue to follow the CFS research trail. There does seem to be a lot of CFS and POTS overlap. Unfortunately as has been pointed out there has not been enough CFS research funding. There are still so many unknowns. For myself, as I had always suspected it is now thought likely that my battle with meningitis a number of years ago was what triggered the development of auto antibodies against my autonomic nervous system. I am now awaiting approval for IVIG.

Janet

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  • 2 months later...

I think a lot of the ME/CFS docs have been realizing just how prevalent dysautonomia is with their patients and therefore are starting to get more research going related to that aspect of the disease. I know my ME/CFS doc has said he suspects that latent viral infections are affecting the baro-receptors and causing a lot of the tachy/BP issues.

My ME/CFS docs are big believers in MCAD but also think mitochondria are involved somehow as well.

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  • 3 months later...

This is a little bit of an old thread, but I thought the above people might be interested...  My daughters were recently asked to be part of a CDC funded study that is trying to find a link between CFS and chronic illnesses.  The doctor that is heading it up is nothing short of brilliant and I'm looking forward to finding out what they are able to uncover.  We happened to have whole exome sequencing done several months ago, and will be sending that info to them to study.  So glad that this study is well under way.  I'll let you know what we find out. 

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I didn't know when I posted last December that prolonged bed rest and deconditioning can cause POTS and other forms of OI....this is a big reason for the overlap.

My illness began with dysautonomia, but overcoming my deconditioning now is a big challenge....and I've been working with a trainer for six months. Yet I am up and about again...so it has been very beneficial (if arduous...and she is very sensitively pacing with me).

 

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  • 1 year later...

I was diagnosed with Fibromyalgia-very similar to CFS-back in 1995.Fatigue has been a plague to me for so long!! My TTT showed vasal/vago syncope or CGS (cardio-genic syncopy) a relative or sub species of POTS,but with most of the POTS symptoms

Debbie

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