Search results

Also The Chiari EDS Center also now employs: Anne Maitland, M.D., Ph.D. Allergy and Immunology Director MCAS Center “Dr. Maitland has now joined Dr. Paolo A. Bolognese, MD, director of the Chiari Neurosurgical Center, and Dr. Ilene S. Ruhoy, MD, PhD, the Medical Director for the EDS/Chiari...

And I see also that Ilene S. Ruhoy, MD, PhD, a neurologist who I thought was in a medical practice with Dr. David Kaufman MD is now Medical Director for the EDS/Chiari Center at Mount Sinai South Nassau Hospital. https://chiariedscenter.com/ilene-s-ruhoy-md-phd/ I don’t see where Dr. Kaufman...

Just read that Jeff Wood now works as Data Collection and Screening Coordinator for the Chiari EDS Center where Paolo Bolognese, MD is Surgical Director https://chiariedscenter.com/contact/

Looking for views on this study https://www.cell.com/heliyon/fulltext/S2405-8440(23)02594-X Abstract Hypermobility involves excessive flexibility and systemic manifestations of connective tissue fragility. We propose a folate-dependent hypermobility syndrome model based on clinical...

I was a patient of Kaufman from 2015-2017 and his fees were much much lower than cited above at that time. It seems after cci (both Jen and Jeff were his patients) his waiting lists got much longer and his fees much higher. I find the situation very sad.

@Jonathan Edwards How useful do you view autoantibodies tests to diagnosis small fiber neuropathy? The paper above cites https://www.medscape.com/viewarticle/936745 “A significant proportion of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia may...

@Jonathan Edwards What’s your take on an increasing number of PwPE being diagnosed with small fiber neuropathy (by skin punch biopsy) and being prescribed ivig as treatment. I know a number of PwME in that situation. Other PwME are being diagnosed with Sjogren's and are being prescribed ivig...

I have done both CBT and ACT and found them extremely helpful—for anxiety and depression. It doesn’t make any sense to me to use either for ME/CFS and I find efforts to do so extremely inappropriate and concerning.

I had IVIG treatments in 2016-2017. Prior to that I had subcutaneous immunoglobulin treatment, with no resulting improvement in health from either. I notice more people with ME saying they’re being prescribed this treatment recently though, in particular after being diagnosed with small fiber...

Moved from the OMF news thread. I just watched this talk: Progress and challenges for a ME/CFS diagnosis - By Prof Ron Davis and Janet Dafoe to Sheffield ME & Fibromyalgia Group on Oct 12, 2021 At the end of it Ron Davis made the following statement in reference to spinal issues in ME/CFS...

Interesting discussion. I am severe, and my husband happens to be a retired photojournalist. He took a picture of me sleeping in which I look dead, and we used in 2019 for awareness day. I’ve been sick for a long time—going on 20 years, mild, moderate to severe now, and he’s taken...

Moved post This subject below is the one that I saw posted about elsewhere. I wasn’t aware of PwME supplementing with Oxaloacetate. PwME are now discussing doing so based on this information. As reported in the tweets Dr. Kaufman reported no adverse effects. Some have expressed concern that...

I saw a post that elsewhere about this that concerned me and I’m now reading through the Twitter posts and have questions and concerns. On this one ☝️ a question: is this accurate? If I am reading correctly it is from Dr. Nath’s talk. I suspect my immune system is dysregulated, but was not...

@5vforest I feel exactly the same. I have an upcoming appointment with a new doctor, and was concerned when I recently read a PwME’s account of her first appointment with this doctor because among the recommendations was an mri to screen for cci. I’ve decided I am not going to do anything on...

So the scientific evidence isn’t there because it hasn’t been studied. From that we can’t and shouldn’t conclude that serious side effects cannot occur at low doses. Whether or not you are concluding that, other PwME are. Also, when scientific studies are not available, experiences of...

If the side effects lead to suicide, whether or not the side effects would have gone away had abilify been discontinued is a moot point.

No I am not misinterpreting the facts. Actually yes people have been prescribed abilify for depression at lower doses of 1-2 mg and have experienced side effects. Whether or not there is anything published on this is not something I have researched, but I would be surprised if absolutely...

No from what I have read in fb groups these are not things that are occurring with just one (or a few) patients. But they are entangled already. Didn’t Stanford start using abilify for ME, and now patients around the world are asking their doctors to prescribe that medication according to the...

I agree @Hutan I have read similar reports on fb groups. I am concerned about the same issues. It is surprising that Stanford would operate this way, but I had heard very negative accounts about the quality of treatment there even before abilify was in the limelight—enough so that I chose...

I’m the US and was prescribed methyl b12 shots to be self administered but there was sadly no teaching involved. They were done subconsciously though not IM. I have been prescribed a number of self administered treatments with no teaching. We do have an easily accessible system for getting...