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I’m glad this is being discussed. I last had alcohol at a party about 10 years ago when my ME was mild. Granted I did have quite a few drinks which I could normally tolerate fine, but the next day I could barely walk and the body pain was agony along with the muscle weakness and flu like/toxic...

Really surprised Dr Gall is associated with this. He truly believes patients and knows they’re not “mad” yet has been affiliated with a few of these articles as of late. I don’t understand what is happening. He personally said to me that it’s sad what the BPS lobby are doing with “MUS” and that...

Thanks for your comments. I’ve found the grant information: https://reporter.nih.gov/project-details/10869779 Development of humanized microbiota mouse models of ME/CFS Project Number1R21AI183042-01 Contact PI/Project LeaderLOMBARDI, VINCENT C Awardee OrganizationUNIVERSITY OF NEVADA RENO...

I think their prior research hypothesised that antibodies were potentially reacting to bacterial antigens. Could this be tested for if the mouse model was given a certain bacterial composition of faecal matter?

Shared recently on the WPI Facebook site: https://www.facebook.com/share/p/LqnDkLQRGktPubRD/?mibextid=WC7FNe “Vincent Lombardi, Ph.D., to develop first double humanized fecal transplant mouse model to study ME/CFS Vincent Lombardi, Ph.D. Vincent Lombardi, Ph.D., associate professor of...

I would agree that the mechanisms going on are likely complex. How can we explain the significant dependent acrocyanosis seen in many people with POTS? It’s hypothesised that it’s due to reduction in blood flow to the skin by the small blood vessels potentially due to a defect in nitric oxide...

Indeed there is this contradiction in the data. Is it an oversimplification to think you can get peripheral vasoconstriction so poor perfusion of exercising muscle in an attempt to maintain cardiac pre-load due to excessive venous pooling? With Midodrine on board, compression stockings and...

I may be wrong here but I thought Dr David Systrom’s invasive CPET findings were quite interesting showing poor systemic oxygen extraction in a subset despite preserved cardiac output and BP despite ubiquitous “pre-load failure”. He proposes arteriovenous shunting due to SFN in the periphery as...

Total n=1 experience here but my ME looked like it was triggered by a HHV-6 reactivation when I was 12 years old. I had a rash all over my torso (as is common with many viruses) but my local hospital at the time said it looked like roseola. The same rash happened to me again when my ME further...

I find this fascinating. I have painful bladder syndrome and widespread body pain/constant migraines in addition to my ME and PoTS. I’ve often been told there’s a role to play with the mast cells interacting with the small fibre nerves. My peripheral nerves on skin biopsy had signs of...

I’m awaiting my results for sodium channel mutations which has taken nearly 2 years to come back due to a paperwork mix up. I’m not sure how it would fit with dysautonomia. I share both that and severe widespread pain. Have you had any response to sodium channel blockers? I haven’t.

I found this comment by Kaufman particularly depressing and offensive without evidence: “Then there’s the profoundly disabled, mostly bedbound, group. Dr. Kaufman noted all the drugs in the world, all the titrations, all the treatments for mast cell, bacterial overgrowth, their autoimmune...

To me it doesn’t make sense how he thinks long covid if caught early on can be reversible yet ME/CFS can’t. They have no treatments yet for long covid so if it’s the same/similar mechanism then surely all the people currently with long covid will also be “damaged” if the disease process goes on...

Posts moved from Long Covid in the media and social media I wanted to refer back to the article on page 6 of this thread that’s been on my mind lately and quoted below. Avi Nath mentions there’s already been damage in ME/CFS which is hard to reverse. This has affected me negatively about...

A newly set up long covid children’s clinic at my neighbouring large teaching hospital trust. https://www.cuh.nhs.uk/news/childrens-service-to-monitor-omicron-impact/ I was pleased to see something at least in place until I read the following: “GPs, community nurses, and local...

I have just come across a YouTube video published on the 8th November entitled: ‘ME/CFS and Long COVID: A Discussion between Dr. Avindra Nath and Dr. Takashi Yamamura’ They discuss the earlier B cell receptor findings from the Japanese group. Avi Nath seems to be impressed and thinks...

I’ve had burning eyes as my ME, FM and PoTS has gradually progressed over the years. Nobody has ever explained this to me. Although I’m aware that the corneal nerves can apparently be affected in FM according to the current research.

Not a very nice read in the times entitled: Why is Britain now the capital of long covid? https://apple.news/A-Qike_HcTKSHanFINYe3Ig Apparently long covid is so prevalent in Britain due to the “chronic fatigue lobby”. There’s many other appalling comments in this write up.

For completeness this is the Patient 1 case summary: Patient 1 : Patient 1 was a woman aged 37 years, who had ME/CFS for 22 years. She participated in the first double-blind randomized trial using Rituximab versus placebo (two infusions two weeks apart, followed by observation), as described...

I've just come across a patent from Fluge and Mella which looks like it was updated/published in March 2021 entitled 'Method for the treatment of chronic fatigue syndrome using an inhibitory or cytotoxic agent against plasma cells'. The description of the patent is a long read...