A.B.
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What does this test measure again? ATP endurance of cells?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks @Ben Howell for explaining this and I was wondering if there is a way that people can make donations that are especially earmarked toward the development of this test so that more people can have it in the future?
IMO.
@Rose49 my sister is in remission (previously severe) and I'm currently quite bad (in the past I've had decent phases of almost-remission). This maybe of interest? We're in the UK though, you probably have similar siblings nearby.I would like to know if ME sufferers are tested that are in remission for some years,
I'm sure they'd want your blood if you were closer! Hang in there! So glad your sister is better!@Rose49 my sister is in remission (previously severe) and I'm currently quite bad (in the past I've had decent phases of almost-remission). This maybe of interest? We're in the UK though, you probably have similar siblings nearby.
My sister is coming here later today to care for me, which is a weird thing when I think back to how weak she was. Also that there's an element of randomness/spontaneity even without intelligent medical care, we don't necessarily get stuck like this forever.
@Ben Howell this is definitely the best thread on PR at the moment.
HI @Rose49, just another thought here - definitely relevant to the UK, but doubtless elsewhere. Yes, absolutely, finding the cause and thereby treatment is without doubt the holy grail of what Ron and his researchers are striving so hard towards. There is also however another crucially important intermediate goal, that could improve the lives of ME sufferers considerably, even before cause/treatement are discovered - a way of clearly demonstrating to the medical professional and authority-figure disbelievers that ME's persistance is biological in nature, so ME sufferers at least get treated with the respect they deserve. This would be a huge step forward.This is Ron's research! That is the goal! Donate to OMF! The money funds his research! The point is to figure out the cause and find a treatment/cure. That is what he is doing. The test right now is a way to differentiate between CFS and other disease or healthy and find treatments that, when added, the cells don't die under stress. This is a progress report. It's not finished yet. He works on it every single day.
More money will enable it to go faster.
I think we should crowd-fund a ladybird book.
Agree Barry, so many in the UK and elsewhere do not have the option of seeing private doctors and our NHS and benefit system treat us appallingly. Patients, including children, continue to be adversely affected by GET daily, many becoming severe because of it. We even have difficulty accessing treatment for other non-related medical conditions. Sadly, to me proving the illness is real is equally as important to finding treatments. We are so desperate to be believed and treated with respect, and to STOP THE HARM
Sending more love to all , it's so wonderful to follow this exciting adventure with you all. I keep being moved to tears, I cried when you said how friendly the medical staff were at Stanford, that is a dream for many of us.
Wouldn't it be wonderful if there was enough money for an additional team to work on developing the test, while Ron concentrated on the cure?
Now gradually seeing if what they've found is true for other ME/CFS Patient's (yes, so far) or healthy controls (no, so far).
I would like to know if ME sufferers are tested that are in remission for some years, in other words would you always be tested positive with this test even if in remission or "cured".
If this was not tested what would be your "best guess" ?
Yes. That is happening very soon.
I think we should crowd-fund a ladybird book.
The full appointment lasted over 2 hours, and I left with a bunch of options, plus considerably less blood for all the testing. Thats the key thing here-options. The ability to try different things. Its much, much more than the NHS have ever given me.
Here's hoping for that 5%.
Help me @TiredSam or anyone else. My poor brain, I can't figure out what a ladybird book is.
This delightful book is the latest in the series of Ladybird books which have been specially planned to help grown-ups with the world about them.
The large clear script, the careful choice of words, the frequent repetition and the thoughtful matching of text with pictures all enable grown-ups to think they have taught themselves to cope. Featuring original Ladybird artwork alongside brilliantly funny, brand new text.
Read more at https://www.penguin.co.uk/books/291381/the-ladybird-book-of-mindfulness/#quf6j7I7CVs5XKAq.99
While this test is super interesting to us all (and I'm sure Ron will tell us more as soon as he can), let's keep in mind that this is Ben and Claire's "adventure" thread. We get to come along for the fascinating ride, but it isn't the place to discuss research. There are other threads for that.Up next was to test my blood with Ron's nano fabricated electrical impedance device! Try and say that quickly! We took a draw of my blood to see if it would react like Whitneys (and the other CFS patients) when the cells were put under stress. The test would take at least a few hours to come back.
I was really hoping it would come back the same as all the others, but if it did not then so be it.
Throughout the day I pondered on what the result might be, the incredible science involved, and the wonderful team at the Genome Centre.
Late that night the results were in. My blood WAS reacting like Whitneys!
This is Ron's research! That is the goal! Donate to OMF! The money funds his research! The point is to figure out the cause and find a treatment/cure. That is what he is doing. The test right now is a way to differentiate between CFS and other disease or healthy and find treatments that, when added, the cells don't die under stress. This is a progress report. It's not finished yet. He works on it every single day.
More money will enable it to go faster.
Help me @TiredSam or anyone else. My poor brain, I can't figure out what a ladybird book is. The only lady bird I've heard of was the name of one of our (U.S.) x president's wife.
Getting validation is a beautiful thing. Each and every patient deserve this.Very endearing and entertaining thread. Thanks, Ben.
Donations to OMF go directly to Ron's research. He is an amazing scientist and is motivated by Whitney's and all patients' suffering to get treatment ASAP. This is the #1 goal. This thread is about Ben's trip. I'm not planning to respond to questions about the science on this thread any more. Ron's talk video soon will give more info. Just know that your very generous donations will help him make progress sooner.Thank you @Rose49 for clarifying and I did not know that donating to OMF was the same as donating to this specific blood test that Ron is working on. Even though you are calling it a "Progress Report" and "Not finished yet" I was hoping there might be a way that we could donate specifically to this test which distinguishes CFS from other diseases (and maybe we could make the donations in honor of Ben & Claire's trip?) as I know many are so interested in finding a way to help move this particular test and piece of the research forward and more money will enable it to go faster like you said.
Jen, I had absolutely no idea what a "ladybird" book was either (except for Ladybird Johnson the former president's wife) but felt too stupid to ask! Am glad you asked so others could explain it!