when I first heard this news I hadn’t realised the population size is just just 6.6 m. & they are putting $3m per year. £2.2m. Is that correct?
Adjusting for population size, I think that would be like The NIH putting in $144m per year Or the UK putting in £22m per year. Or £88 per person With ME per year. Contrast with actual uk investment of £< 1m per year & £3-4 pp/yr
clearly it shows where many countries are falling short But in its own right it’s a significant and unexpected boost to our research, although I personally shudder at ten year plans when I’ve been ill so long already.
Thanks. Dr VanElzaker says in this video that the root cause of what presents as ME/CFs is different in each person. He says, therefore, the root cause needs to be determined. He says, he recognises this is difficult. So, if he is correct: this means that the ME patient needs to have massive work ups to try and determine what is wrong and where. So many patients have had massive workups and nothing was found. I'm not sure what is to be next. Is it that at Mass. Hospital they have the means to do these massive investigations? He doesn't address 'recovered' patients after this massive exploration. He is a very presentable fellow and pleasant to listen to, but I'd like to know what the next step should be. Dr. Feldshtein (??? spelling) at the same hospital, who is a lovely sympathetic doctor, whom I have seen interviewed, tries to help patients. However, the arsenal used is basically what we all know already. And this arsenal has not produced recovery really. I'm not sure what to make of all of this at this point. All comments and corrections welcome. Thanks.
While I think he is right about neuroinflammation being a primary cause of symptoms. I don't think that each person has a different cause. I have said this many times before, because I feel so strongly about it.
I think they have already found the primary cause but haven't been able to prove it yet on a biochemical level. ME/CFS researcher Mady Hornig has a video out explaining what she thinks is the cause of ME/CFS and how it causes mito. dysfunction, neuroinflammation, immune system dysfunction and all other symptoms.
She thinks it's gut dysbiosis and leaky gut. This is why they can't find any other pathogens causing this illness, imo. High levels of lipopolysaccharides (LPS) in ME/CFS have been found in several studies and several ME/CFS researchers have said they think the gut is the main cause of ME/CFS.
Hornig thinks toxins from the gut, including lipopolysaccharides, hydrogen sulfide and lactic acid are causing immune system dysfunction, mito. dysfunction, brain inflammation and all of our symptoms.
She says these toxins can get directly into the bloodstream from the gut but also the vagus nerve can detect inflammatory bacteria in the gut and signal the brain, causing an immune response in the brain, neuroinflammation and the sickness response.
Michael VanElzakker, Phd, is a neuroscientist affiliated at Massachusetts General Hospital, Harvard Medical School, and Tufts University. He conducts his imaging research at the Martinos Center for Biomedical imaging. We discuss how he uses fMRI and PET imaging to study neuroinflammation in patients with chronic disease, including the condition Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
ME/CFS researcher Mady Hornig has a video out explaining what she thinks is the cause of ME/CFS and how it causes mito. dysfunction, neuroinflammation, immune system dysfunction and all other symptoms.
My opinion- my gut function can improve quite dramatically, but the ME does not seem to follow suit. If we have a bad gut day, the ME symptoms worsen. Real bad, PEM will happen. But on good days with no apparent gut issue- the ME is still driving the bus.
I also don't feel any of my situation has ever been thoroughly investigated.
I wonder how many publications on gut issues will transpire? 1990s era- same story being discussed (get yourself a hookworm, fix this gut problem).
How many studies will occur before somebody actual does something. How many gut illnesses will they name? IBS rate is much higher than the ME rate...How do we differ. There we are on our merrygo round.
I share your frustration. I think it comes down to that word that makes so many of us cringe. "Research". Science really knows very little about how the bacteria, viruses etc. in the gut work together or how they affect the body and brain.
I've been working on my gut daily and fairly aggressively for over 3.5 years and it's still messed up. I think the best bet is going to be FMT. But they need to find ways to make the transplants much more likely to implant and last.