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Speaking of deconditioning. In the last few months I've experimented and intentionally changed my time spent upright patterns. It seems that avoiding sitting and walking for a week is noticable in some bad ways too. It felt like there was a new feeling of lazy tiredness. Is this the terrible...

The petition references this page as describing a recent ME outbreak in Spain: https://wwwnc.cdc.gov/eid/article/25/1/18-1089_article It says I then went to see how well the illness experienced by these patients matched with what is generally known about ME. It sounds like these patients...

They talked about this in the past but did not have a proper control group if I remember right. Do they have a control group now? Although, even without a proper control group if there's no improvement in the metabolic alterations after GET the paper is still useful. At least it suggests the...

https://translate.google.com/translate?hl=en&sl=da&u=https://dagensmedicin.dk/nok-er-nok-lad-laegerne-vaere-laeger/ Rest behind a paywall. Can anyone get access to the full article?

Systrom and Keller's talks are interesting worth watching @Jonathan Edwards Systrom begins at 4:54 Keller begins at 5:22 https://videocast.nih.gov/summary.asp?Live=31636&bhcp=1 Not the most important thing, but Keller is collecting accelerometer data and lookinat activity data before and...

They are describing graded exercise therapy. They also don't distinguish between pacing for chronic pain and pacing for ME/CFS. The references listed are all for chronic pain, but the description refers to GET. Unfortunately the evidence shows a lack of effect on activity levels and fitness...

I wonder if we could learn about the real predisposing factors by studying people with vague symptoms that are typically ignored or dismissed as not an illness. Some of these people then go on to develop ME/CFS or other serious illnesses. Maybe medicine has such problems understanding chronic...

Also interesting that so far everyone else agrees with Dr Bateman that patients may not recognize their own orthostatic intolerance.

This is a big reason I'm so angry about Wessely et al. They have tried to convince patients and society that there isn't really anything wrong with us. It is the exact opposite of what is needed and what is helpful. By the time patients are so sick that they can no longer deny that there is a...

What about putting the feet in hot water, then cold water and alternating for a while? This should in theory be training for the muscles responsible for vasoconstriction.

There is an opportunity to tell NIH to fund a study like this. https://grants.nih.gov/grants/guide/notice-files/NOT-NS-19-045.html

If I let a foot hang down the side of my bed so that it's the lowest part of my body, it will soon begin to hurt. It feels like internal pressure on the blood vessels.

The small number of donations from the US may also reflect the fact that the CDC has withdrawn its recommendation for CBT/GET. I think what US now needs is to lobby congress for more ME/CFS research funding.

To make a blood test, it seems one would only need some healthy cells, a method to extract exosomes from the blood of patients, and a method to detect whether the healthy cells have their metabolism disrupted when exposed to these exosomes. We might see a race to develop the first blood test...

So many questions about exosomes. If exosomes are transmitting the disease state to other cells, which cells are producing these exosomes? Why would exosomes carry a signal that impairs energy metabolism? Has anything like this been seen in other illnesses? Peripheral exosomes are capable of...

I suspect that many people with OI don't think they have a problem with standing upright. They think they have fatigue or social anxiety or get tired quickly or something along those lines. They don't make the connection between the symptoms that gradually arise and wax and wane when they spend...

Yes, maybe Dr Bateman is wrong, but I think she is right, based on my own experience. I think I've had mild OI for a long time. There is a family member that fainted often in her youth. My mother spends a good portion of her day on the couch with legs at a higher level than the head. She...

Mild OI is hard to describe: just a vague sensation of feeling unwell and being unable to connect to other people, having embarassing difficulty paying attention or doing mental tasks (that include conversation). A bit drifting away from the present and being unable to shake it off. OI can also...

The reason I suspect OI is underdiagnosed because mine became quite noticable, and I was still having doubts and didn't believe I had POTS (I knew it was some form of OI but didn't recognize it as POTS), even though a test confirmed it. The test made me realize that the symptoms during...

I haven't seen much but was struck by orthostatic intolerance surfacing again and again. It is low hanging fruit as Bateman said. She also said that patients often don't realize they have it. That aligns with my suspicion that it is underdiagnosed. The other low hanging fruit is probably the...