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My daughter tried IVIG and it did not alter things: after several infusions, her mouth swelled, tongue swelled, and Benadryl IV had to be administered. Another doctor later said not to try it again.

Thanks. Now to move on: there will be another ME conference in the UK. Does anyone have more details, so that we can register to watch. I registered early for Berlin conference, but I noted there was a point at which folks could not register. So, if anyone knows about the UK conference, many of...

Does anyone know if this conference, these talks, will be on line at some point? You tube? Thanks

If not mistaken, Dr. Prusty said he had a 'model.'

And what is the test for subgroups? And can autoimmunity be diagnosed? This is a great thread. I really do not appreciate the 'teasing.' The life of patients is unrelenting hell; they and families sit on the edge of chairs hoping for help and never any forthcoming. I have concluded that the...

A number of ME patients have done apheresis to remove clots and this has not helped them with any improvement. Some have been on blood thinners as well. This is not a possible treatment, if he is suggesting this too. Very discouraging because it is looking like help is very far in the distance...

Trish is right: heartbreakingly beautiful work. These poems brought tears to my eyes.

In Canada (saying from Mohawks): too many Chiefs here not enough Indians. Selfishness at the expense of lives, and suffering, and a very vulnerable population. And many young people who have died and continue to die.It is appalling that folks are not willing to see what others have to offer.

Here's someone who did a lovely job of making a graphic of Veronica's poem on twitter:

It is very challenging to write a "found' poem because the poet must not change verb tense, nor make a singular noun plural, nor add in a single word of her own. It's about creating your own meaning using another text, and all the vocabulary found therein. It is also about creating a dialogue...

The amber in Rivne is up to 50 million years old. And pieces of worked amber were recovered from Paleolithc and neolithic sites in the Dnipro area. It seems that at one site, Mezhyric, they found 4 mammoth bone huts from Cro-magnan Homo sapiens and they found over 300 pieces of amber attributed...

Hello Hutan, you and Simon. are both correct: amber is central in Ukr culture. It is now a reference to the country on fire. But amber is historically used by Ukrainian women almost daily as necklace wear because it is believed that amber brings health. Then we come to the whole amber industry...

And how does one heal this? A million protocols for this have been suggested, and no result. Thank you.

Trish, do you recall how many of the 25 had these clots? Thanks.

Thank you for refining this; you see, the Facebook apheresis page simply indicated Scheibenbogen recommends apheresis, without specifying. At any rate, the ME situation for patients is just interminable suffering, and for their kin, unrelenting heartbreak.

I think that Dr. Scheibenbogen has said that apheresis might help; I believe I saw her name on the Apheresis Facebook page. She provided a list of what might help. But there are not many reports from ME patients at all, at this point. I wrote to Dr. Pretorius and asked her when her paper was...

Not sure if this has been posted; pls remove if duplicate here. https://www.kinder-verstehen.de/wp-content/uploads/BC007_miracle_in_need_of_explanation_122421.pdf This is by: Dr Renz-Polster. He tries to examine why BC007 may help LC and perhaps also ME. Anxious to hear what the gifted...

No updates from OMF of late. Dr. Davis does have the microscope. No news.

We have the Parasym, and it has not helped. It just irritated the tragus. Canada has now officially announced that vagal stimulation is an accepted treatment for Long Covid. Yes, hard to see how the tragus can reach the whole nerve and brain. But there are people who swear they have had...

Dr. Moreau is a gentleman and a scholar. He has a small research lab at St. Justine Hospital, quite renovated and very nice. And he is dedicated and sincere. However, there is no help for patients, none whatsoever. General Practitioners are poorly if even informed about ME, and it is usually...