1- Medicine has made much progress, but the amount we dont know, compared to what we know, is enormous!
2- CFS is multiple diseases. So the only thing we all have in common is a group of "symptoms", i dont think you can search for the cure based on symptoms. It's like saying you found a cure for stomach pain! A stomach pain could be due to a bad lunch, or cancer, or ...
3- So far there is zero progress. All the nice papers that are coming out only show some correlation, not causation. The correlations are also pretty weak. On top of it all, the sample sizes are tiny!
4- Also, research is conducted when medicine acknowledges that there is a lack of treatment and understanding with respect to an illness. However, most doctors are fairly certain they understand CFS. Almost all the doctors i have met have been pretty sure my problems are in my head or due to stress. My best friend that i grew up with is a family physician and he still insists that i need to just take SSRIs and exercise (he subscribes to this GET bs).
5- And the worst problem? resources! There are so many cancer research centers around the world and the best minds are working on this disease and still there is only incremental improvements. Compared to cancer there are literally no resources being spent on ME/CFS. I was looking at Dr Davis's lab, there are just a handful of postdocs! one per area of research! they have *one* bioinformatics person crunching the numbers on their tiny dataset of 20 people. Anyone who has worked in statistics will tell you 20 is pretty useless. There are individual cancer research centers (of which there are MANY) that have multiple times the size of resources and funding as Dr Davis' lab. Unfortunately ME/CFS "disappears" people, so its hard to gain some traction in terms of raising funding and awareness when we are all bedridden and as a result at the bottom of the socioeconomic ladder.
1. True, and I wish doctors would acknowledge this instead of running a few basic tests and saying "There's nothing wrong with you." but we don't need to understand whole medicine to get cure for ME/CFS. There's already so many cures and treatments for different illnesses that we have no idea why or how they work. But they work..
2. We don't know that it's different illnesses. There's some research pointing to subsets, there's other research (like metabolic studies) showing it all has the exact same underlying mechanism. Shouldn't claim anything until more proof becomes available. Researchers working on finding a cure are not fighting symptoms, that's what our clinicians are doing. Cortene, CDR, metabolic trap etc. are all aiming to fix the potential cause.
3. This is true and I am looking forward to seeing new research published soon. Research that should be coming out in the next few months to a year should be bigger replication studies which is unheard of in ME/CFS, so that's exciting.
4. This is very easy to change. Most doctors respond well to information from CDC, NIH, IOM and other legitimate sources if you bring it to them. If they don't change their mind, change your doctor ASAP.
5. Cancer is so different than ME/CFS that it's pointless to compare. Cancer is more than a 100 different diseases that are deadly, that involve constant changes and constant mutations (btw, huge strides have been made recently in cancer research with liquid biopsy for screening, and immunotherapy for treatment.)
Dr. Davis has so many collaborators all over the world, you shouldn't focus just on his lab. Dr. Xiao has always been analyzing Severely Ill data from Harvard, and now Harvard has a whole ME/CFS Collaborative Center thanks to OMF. Dr. Jonas Bergquist is in Sweden. Dr. Naviaux has his own lab.... etc.
No one who has worked in statistics will tell you dataset of 20 is useless. It depends on so many other things. And since they are severely ill the signals we see will be stronger. Also, they are getting compared to mildly ill patients as a cross-reference.
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I find this kind of doom-and-gloom posts pointless and inaccurate. Yeah, it's going to be difficult, so let's use our precious energy on advocacy, fundraising, spreading awarness etc. rather than writing walls of text about our darkest fears about the future which so far no one has been able to predict.