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I wish that Nobel laureates could investigate ME patients as well as banana flies... https://twitter.com/DrMaureenHanson/status/915031726946230272 Maureen Hanson‏ @DrMaureenHanson 3 okt. ME/CFS patients feel like their circadian clocks are disrupted. https://tinyurl.com/y7oodfo4 . More research...

Today there are two new articles in the Swedish newspaper Svenska Dagbladet about ME. They too are well written and will contribute to a new era in Sweden, I´m sure. They are both behind a paywall. "There is a need for a crisis commision for the disease ME/CFS" Prof. Jonas Blomberg is...

I think the interview and article is very good and well written. It will surely contribute to more awareness about ME/CFS here.

Thanks @Billt. I found the article and the linked pdf quite interesting. It might definitely relate to some of us. Maybe the title of this thread should have the same title as the pdf? IVIg for apparently autoimmune small-fiber polyneuropathy

The dose is individual, and it´s also depending on genetics, if it works or not, according to my doctor.

I would have replied to you @Agapanthus first, but I´ll be back. I do understand your situation @Squeezy. I think I´ve been through all kind of stages of treatment combinations, including cortisol deficiency. What symptoms, in detail, if it´s OK to post them, do you have? Could it be that you...

I think you are right, but also that Lyme is the overall most common infection to cause "Herxing". To not take the thread too much off topic, I should add that all symptoms of both ME and Lyme, including symptoms from low blood volyme and OI, were gone for four months after I had had 12 weeks...

I think it´s a different situation with active ME, which he doesn´t seem to write about. Many of PWME have it too. I´have it ( but so far no immunodeficiences), and there are also some threads discussing it on the other forum. I have read about GG therapy before in this context. The...

Dr. Teitelbaum, who has declared that he suffers (or suffered) from CFS has just posted on his blogg about Ortostatic Intolerance in Fibromyalgia. I think the article was quite good and with general facts and information about OI. He doesn´t mention ME/CFS in his blog as far as I can see, but...

Hi @Agapanthus, I recognize your story too well, and I´m sorry to hear about your struggles. There is a reason that the book "Stop the Thyroid Madness" was written... Treatment with natural progesterone for osteoporosis has been tested and found effective by late Dr. John R Lee...

Did anyone try this probiotic? According to an ad in a Swedish paper it was developed from findings based on the Human Microbiome Project. I haven´t, so far, been able to find any published studies. FWIW, here is a link to an article by Dr. Mercola...

The clinical signs were all that he needed. You may find treatment protocols by Drs. Teitelbaum and Bell if you google ME/CFS+low blood volume. I have computer problems ATM, otherwise I´d link to them (among others).

Hi Peter and welcome to the forum, Yes, I have the same symptoms as you have as of blood pressure. I´m also lucky not to have POTS, but still I have symptoms from orthostatic intolerans. Before I knew why, a cardiologist told me that I had a low blood volume. At that time I didn´t know that it...

Good point. I have nothing to add to this discussion, but I have experienced that specialists interpret lab results quite different than GP´s do. This happened to me when testing for B12, potassium, ferritin, IgM and IgG for Lyme among others. @Justy, I do hope that you can get this sorted...

Hi @duncan , good to see you here. I hoped that you would comment on the test. The technology seems to have been used for a decade. I guess, Lipkin must have experience from using it as he has been working with Ebola and Zika infections among others. Earlier we were told that he would present a...

Could it be a meat allergy, maybe caused by a Lyme infection? Low stomach acid ( do the blurp test) that causes problems with digestion? Ageing and hypothyroidism decreases stomach acid. Is there a reaction to all kinds of proteins? Probably not as there is a smaller amount in many foods. Rice...

A new test to detect Lyme infections is available. It was validated in a study here. (The test can be bought online here or here and probably from other providers as well). The quoted part of the study below is particularly interesting for people who have been sick for a long time. Looking...

Not to forget the amount of stomach acid and bile, that also affect the microbiome. (Beware, people with hypothyroidism) According to a Lyme doctor, Bifidus bacterias are low in infected patients. A diet high in omega 3 and fish has been recommended by a group researching the microbiome...

Interesting interview. Edit: I wished Lipkin already was back in his lab to analyze the collected samples as of possible pathogens. He told that he is sure that they will find any present pathogen, or prints of them in the "immunological memory" that we all have. Can´t wait to get their results.

Really good news! I´ve been following Derya on twitter https://twitter.com/Derya_. I like that he, beside the focus of his research, tells that he carefully listens to ME-patients. Maybe we should invite him to the forum? I don´t mean we should take his precious time, but he might be willing to...