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I almost never had any tinnitus before getting ME. Now after I would get loud and short bursts of tinnitus in one ear or both ears during or after overexertion... like clockwork. Lasts a few seconds to a few hours. Strict ketogenic diet greatly reduced tinnitus symptom though not totally gone...

https://metro.co.uk/tag/you-dont-look-sick/ A weekly series published every Sunday telling the stories of people with invisible illness and disabilities. I hope they will do one for ME/CFS

For those who were concerned about empty seats at the conference... Masur Auditorium has 488 seats. Before they removed the participants list from the conference site I counted 300 participants, but they removed it probably a month or so before the conference so more likely registered. I...

The flavonoid Dr Levine mentioned was NeuroProtek

Hi all - I've had pretty major PEM starting yesterday evening, it was a long and tough day. Had major sleep disturbance as I often do the night before the first day of conference and was suddenly woken up at 3:00am very wired. Traveling and then at conference yesterday with spouse and mother...

Regarding the immunometabolism talk it was interesting... have there been any high quality studies examining metabolism in ME/CFS in non-immune cell types? Or have they all only looked at plasma? I wonder is the hypometabolism finding restricted to immune cells or more global?

I took a picture of the auditorium but when tried to upload it’s too big and don’t know how to resize just from my phone so will upload tonight sorry

I think though his HLA genetic risk factors work is very interesting

Hard to tell you accurately by scanning the crowd.

I personally think there was really nothing there in the Montoya cytokine results... all moderate patients were no different than controls. I’m not sure I buy this bimodal explanation either. What do people think? I’m sure it was talked about here when the paper came out. Cytokines are a...

Hi all from the conference! Not sure if mentioned in thread but auditorium is pretty full, I’m impressed with the turnout as this is a very large place. It’s a great improvement compared to the previous NIH workshops.

Regarding IQ yes I agree, it can be a convoluted measure. What I was trying to convey is that a significant percentage of people with autism have pretty profound intellectual disability. It’s not about not being bright like some neurotypical people. For example many will never be able to...

I’m not saying it’s a disease either, but I think sometimes we forget that most children with autism have many more symptoms than the well known social/behavioral. Around 56% of children with autism are borderline (IQ < 85) or severely intellectually disabled (IQ < 70) and have a constellation...

I'm not necessarily backing anything they've said, but the thing here is that existing studies can not conclude if exercise is helpful or not because hypothetically it could be that without combining it with the major dietary changes one needs to adhere to then it might not appear to help.

@Esther12 and @Sid from what I understood in the documentary they do not say that CCSVI exists in all people with MS or can always improve MS when treated, though they believe patients should be evaluated for it and doctor and patient can discuss whether they want to attempt surgery. You will...

Even thought the documentary is recent the son was diagnosed with MS in 1995 and his father did the research and discovered the vitamin D link many years ago. They do not say that vitamin D alone can cure or halt MS.

You might still enjoy/find value regarding the corruption between pharma and national ms society making billions on drugs that really don’t work long term. Feel free to ignore the rest...

Pretty standard supplements. But from documentary what’s much more important are the dietary changes and exercise. See supplements list here: http://www.mshope.com/ Also the family has a site discussing the science behind nutritional factors and MS: http://www.direct-ms.org/ What’s...

Amazon Prime Video

I enjoyed watching this documentary recently, absolutely heartbreaking Living Proof (2017) https://www.imdb.com/title/tt6604174/ If ME ever gets to the stage where MS is in terms of awareness, research funding, pharmaceutical industry involvement and treatments, this story shows how patient...