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  1. P

    NIH Stumbles: Asks ME/CFS Denier to Speak on Chronic Fatigue Syndrome

    Strongly agree. When Koroshetz says the NIH must consider different possibilities, he is really saying they are going to consider this speaker's bizarre, unresearched opinion that there is absolutely nothing physically or psychologically wrong with people diagnosed with CFS/ME. This is...
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    NIH Stumbles: Asks ME/CFS Denier to Speak on Chronic Fatigue Syndrome

    Koroshetz' excuse for inviting this "psychiatic historian" is that the NIH has to take into account different opinions on CFS/ME. But this loser is not even a physician, has done NO research, and is not even saying that CFS is a mental illness like depression. Based on nothing at all, he...
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    The Great Chronic Fatigue Syndrome (ME/CFS) Gene Project

    That would be great If we could get a discount for 23andme. I wonder if I could use my HSA (health savings account) to pay for it??
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    Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

    Thank you Merida! I will look up Michael Flanagan and Diana Driscoll. I had a spinal tap done after the surgery, results were normal. But I don't know if a spinal tap would show pressure in the lower brain. Also, I wonder how doctors determine if there is pressure on the vagus nerve.
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    Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

    Thanks again. I just want to make sure I understand this, because sometimes my brain doesn't work. So is EDS3 a recently uncovered form of Ehlers Danlos, or has it been recognised for a long time? Also, is adolase B often related to EDS3? Sorry if I'm being dim witted.
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    Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

    Thanks for the info, Aidan. Question - can a person have EDS but not have joint hypermobility and skin issues? Do doctors now normally do genetic testing for EDS?
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    Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

    Sorry Issie, I said it wrong. The doctor removed a piece of skull to give the CEREBELLUM room. In a Chiari decompression surgery, they remove a piece of skull (and sometime a piece of the first vertera) the cerebellum has room to move back up into the skull. Interesting that my neurosurgeon...
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    Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

    Very interesting. I'm going to look for The Downside Of Upright Posture. I have so many of these health issues. Grew up with allergies & asthma. That cleared up for many years. Then had bad sinusitis. 20 yrs ago, got CFS, Fibro, & Depression. And 15 yrs ago, found out I had Chiari 1, 9mm...
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    Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

    I think so many people, including highly educated physicians, get depression all wrong. In fact, they misconstrue what a "psychological disorder" is at its core. There are clear physical differences in so called psychological disorders. That is why medications that affect serotonin frequently...
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    Hanson's Metabolomics ME/CFS Study Validates Naviaux's Core Finding

    I have a Chiari Malformation. I believe this is also related to Spina Bifida??
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    Ampligen Takes Big Step Forward - Becomes First Drug Approved Anywhere For Chronic Fatigue Syndrome

    I thought I had a moderate case of CFS/ME, but it looks like I'm at about 60 on the karnovsky scale. I can't wait to hear who they think will have the most benefit from Ampligen!
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    Ron Davis Calls for NIH To Take New Approach To Disease with Chronic Fatigue Syndrome (ME/CFS)

    Maybe I'm crazy, but the more detailed Davis gets, the more worried I get. I guess I worry that the results he finds in severely ill patients won't help those of us with moderate CFS-ME. I also worry that if our illness is similar to mitochondrial deficiency, there will be no solid treatments.
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    "Retraining" Puts Linda on the Path to Recovery

    This does not seem like Chronic Fatigue Syndrome - ME. At least not the illness I have.
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    How many docs have you been to in the last 5 years?

    I don't see CFS doctors anymore either. It's a waste of my limited time & money. However I just made an appointment with Dr Blair Grubb at U of Toledo, an autonomic specialist. Florinef is doing nothing for me now, and I'm looking for alternatives.
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    Help Needed to Get Jamison Hill to a Doctor

    I hope Jamison gets the help he needs. Like most with CFS/ME, I can't help financially, as I'm on SSD, and don't have a CFS specialist myself. Prayers for him & his family.
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    PACE Trial Gets Most Devastating Critique Yet

    Oops, Cort I see that you already answered asimilar question to mine.
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    PACE Trial Gets Most Devastating Critique Yet

    My question now is, do you believe The Lancet will now publish an article on or print a retraction of the PACE study? Has The Lancet ever been in such a situation before?
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    Pacing - Can You Improve Without It? An ME/CFS and FM Poll

    I don't know, because I haven't found any treatments that work much. I MUST pace, or I'm miserable. But treatments I try either do nothing, or they work for a short time then stop, or require a higher dose for the same benefit.
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    Brian Walitt and the Psychosomaticism of Fibromyalgia: Another Look

    Cort, you are very calm in the face of Walitt. I am not so calm. I think his written and spoken words about fibromyalgia are somewhere between severely ignorant, and malicious. I don't trust him anywhere near this research.
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    NIH Funds Chronic Fatigue Sydrome (ME/CFS) Grant to Increase Blood Volume

    Cort, thanks so much for this news. I have been diagnosed with POTS and NMH and have been helped by saline infusions in the past. My question - how does one get the oral rehydration salts? Is it by prescription, or can it be purchased anywhere? Thanks.

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