Yann04
Senior Member (Voting Rights)
For me the “acceptance” came after I crashed into very severe in part from being pushed to go to tons of doctors appointments. So do be careful energy wise.
Who are currently the best ME/CFS researchers?
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MinIreland
Senior Member (Voting Rights)
Yes, this is a very good point. I know now that at the very beginning I've likely pushed myself into PEM because I was so busy with medical appointments. I am now taking a calmer approach, where I focus on one thing at a time. It's a very good reminder, thank you!
Treatments are coming from/will come from oncology.
Kitty
Senior Member (Voting Rights)
I think you're right, I too went through a phase of focusing on it a great deal before I could get to the stage where I don't focus on it much at all. Part of that must be processing it emotionally, I guess.
Now it's more like having porcelain skin that burns minutes, or being too tall to fit clothes: practical problems that have to be worked around because they're not going away. Accommodating them automatically, mostly without the need to engage with them emotionally.
That emotional decoupling happened while I wasn't looking. I don't know when it was, but it was probably the point at which I'd made peace with it.
(By emotional decoupling I don't mean I no longer get furious about other people's attitudes, or the way people with ME/CFS have been treated; just that ME/CFS is part of me, like having defiant hair that refuses even to go grey.)
MinIreland
Senior Member (Voting Rights)
Why do you think that, @Jaybee00 ?
There are lots of threads on Daratumumab and cyclophosphamide—both pioneered by oncologist Fluge’s group.
And there are other cancer treatments now being used for autoimmune diseases (e.g. CAR T and Tecli, etc.).
Possible that treatments could come from JAK drugs or from whatever Ron Davis and the Utah folks are looking at, but much less likely IMO than cancer drugs.
I’d guess that the odds are 90% that first {significant/major} approved treatments will be off-the-shelf drugs designed for cancer (immunotherapy) with maybe a modified dosing schedule.
And there are other cancer treatments now being used for autoimmune diseases (e.g. CAR T and Tecli, etc.).
Possible that treatments could come from JAK drugs or from whatever Ron Davis and the Utah folks are looking at, but much less likely IMO than cancer drugs.
I’d guess that the odds are 90% that first {significant/major} approved treatments will be off-the-shelf drugs designed for cancer (immunotherapy) with maybe a modified dosing schedule.
Covidivici
Established Member
My (emergency physician) wife would agree. For the following reason:
Precisely. For the past three years, her response to every study I run by her has been the same: "Is it actionable?" So far, we have a lot of theory, some evidence, but no clear idea of the exact mechanisms at play — much less a path towards effective treatments. A lazy, dogmatic doctor might still dismiss ME outright (and should lose their medical license for it). An arrogant hack will follow the latest "cure". Someone who actually does their homework will acknowledge how little we understand and how little they can actually do for you.
And that puts primary care providers in a tough spot. Because even when they do believe you, do care, and actually are up to date on the latest literature, their hands are essentially tied. Those who are particularly bold might offer to put you on some experimental protocol that had some success in some case studies — and I won't minimize how much that can mean to someone, psychologically — but it's easy to forget that there is risk in doing that as well. The Hippocratic Oath to "do no harm" isn't just a guiding principle: it's a legal requirement. It's hard to pilot someone to safety when you're flying blind.
And as someone who's been spoiled for options and has been able to try many "promising" treatments (SGB, triple anticoagulant therapy, LDN, IMC-2, rapamycin, etc, etc, etc), I now see it as little more than a way to pass the time — to feel pro-active. Just like @MinIreland I'm new to this club (also three years, this fall). And like her, I'm still processing my new reality. I'll be honest with you: what keeps me going is the thought that this is all temporary. Which must sound pretty rich to those of you who've been weathering the storm for decades.
Bottom line, even if I were to continue playing the guinea pig, the odds of my stumbling across a cure are pretty slim — and even if I somehow did, you can be sure it wouldn't remain a secret for long. So I'd be getting the jump on the rest of this community by what... a few months, maybe?
That's not to trivialize the importance of finding a doctor who gets it. That my own family doctor suggested I mix things up with my other (unrelated) meds in an effort to offset (or, as she put it, "not compound") my chronic fatigue made me well up, much to my surprise. Because she cared enough to think outside the box. To see how we could manage this — to feel our way through the dark.
That I should also have an early-adopting internist who's taken personal interest in breaking me out of purgatory is a privilege I do not take for granted. I am as lucky as they come. But it hasn't moved the needle one bit. I'm still here with the rest of you.
So yeah: those who say doctors are useless aren't entirely wrong. I'd just add that it isn't (always) by choice.
As for being overwhelmed by the pace and technical specificity of discourse, I'm no different. But it's not my primary reason for being here. I decided to join this community because it consistently echoed my wife's facepalming over poorly designed studies (she was a nerd long before she became a doctor). Once it became clear that 80-90% of research is little more than grant-justifying busy-work (and I'm not even including the predatory journal paper mill slop), I stopped searching for a cure and started looking for a broader understanding. Ok, no. I lied just now. Still looking for a cure, as well as a broader understanding.
This is a tough nut to crack. But crack it we will. I'm counting on it.
My fav' ME researcher? I'm a fan of David Putrino's approach. "Does this make physiological sense? Yes? Let's set up a trial." Throw shit against the wall. See what sticks. Also fond of PolyBio Research gathering people from different fields of study to compare notes for this very reason:
Utsikt
Senior Member (Voting Rights)
We’ve all been there, some are there still and some keep going back and forth. It’s a perfectly reasonable reaction to this nightmare.
If find it exhausting to constantly search for a cure. So I’ve stopped for now. (Edit: and I have little confidence in being ably to find it anyways) The worst part about it is when the people around you take that as giving up, so they’ll keep pushing long after you’ve stopped.
With ME/CFS and LC it’s probably even higher. It has shattered my confidence in the healthcare system.
To add some nuance to this: you can help chronically ill people without curing or treating them.
PwME/CFS need someone that tells themselves and the people around them that they are actually sick and need to adapt to their limitations. They need to educate the patients about the lack of reliable evidence for any suggested treatments, and to not just pass them on to someone with lower standards.
They need documentation for applying for benefits and appropriate help. They need support through an ongoing life crisis. They need regular health checkups to rule out new or previously missed health conditions.
Putrino takes a treat first ask questions later approach to things. And I think you’ll find that a lot of the reasoning behind the treatments doesn’t actually hold water.
Putrino is popular because he’s vocal about taking covid, LC, ME/CFS etc. seriously and he talks back to the FND and BPS lobby. Which is good. But he could benefit from applying the same kind of scrutiny to his own work.
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Kitty
Senior Member (Voting Rights)
But we all have to go through that stage, and it's not possible to hurry it. All the old hands can do is reassure people that it is possible to reach the point where you can get off the hamster wheel of endlessly searching for things that will bolster your hope, and too often coming back empty-handed and exhausted.
You never give up on hope. You just realise that the present is part of your life, and however tough it is, the here and now has a value. And you can make positive decisions about it, like whether to use it in restless searching or look instead for things that bring you laughter or comfort or peace.
If there was only one thing I could tell my earlier self, it might be that peace is undervalued. Though I probably wouldn't have understood.
Covidivici
Established Member
It's rattled my confidence in all fields of research if I'm honest. Does explain why the perennial battery "breakthroughs" never come to market — to name just one example of hyperbole masquerading as science (I could name many). The publish-or-perish incentives are out of whack and promote myopic self-promotion instead of impartial investigation. Fortunately, some people out there still do it for the right reasons. But the entire system needs reform.
100%. Hence the importance of being up to speed on what is known so that one might advocate for the lever of care one deserves. (Shouldn't be the patients' job to do so, but here we are).
As I'm discovering for having tried a few of them. My favorable bias stems from that part of me that wants a cure now (i.e. being okay with us explaining the how later). It's a cowboy approach, to be sure, but given the number of incidental findings in the history of medicine — and given how little we still understand about this affliction — I don't mind the potential wasted resources in going down a few blind alleys. Unlike, say, a Bruce Patterson, his lab pivots as soon as something that showed promise is debunked. There's value in that too IMO.
#Facts.
His support of the "Is COVID is airborne AIDS" article shows how easy it is to fall prey to conjecture and hyperbole. And it exposes legitimate concerns to attacks by the Marc Veldhoens of the world (I was unfamiliar with the latter and had a very—how shall I put this—interesting back-and-forth with him recently on Bluesky. Like talking to a brick wall — one that likes to say: "I am a brick wall made of strong mortar, you are not: be silent"). Another thing about Putrino I appreciate: the humility to know what we don't know. And the willingness to try.
Covidivici
Established Member
Wise words. One benefit of this curse has been ego-death. My self-worth used to be wrapped up in being useful. My sudden limitations have shown me that useless does not mean worthless. (Useless sounds harsher than I mean it to be: my employers, for example, no longer have a use for me. But that no longer affects my self-worth, which has been a huge release. Now if I could only get my health back, I'd be all set).
And because I've made a habit of depicting my thought process visually, with levity, I hope you don't mind if I do (please let me know if this sort of thing is frowned upon)
Utsikt
Senior Member (Voting Rights)
And the institutions that supposedly rely on the science.. Not much left then!
It’s not just about resources though (and it’s not like we have an excess of resources either), but I won’t go through that here. If you’re interested in the topic, there’s a long discussion e.g. here:
I think he fails here too often by going beyond the evidence by claiming that we know things we definitively do not now.
Doing science is mostly trying to prove yourself wrong. But it’s easy to fool yourself, which is why having a group of people that are willing and able to be critical is so beneficial. And why the publishing etc pressure you mentioned is so detrimental.
MinIreland
Senior Member (Voting Rights)
@Braganca, I saw Dr Rizwan today and he said exactly what you said. He prescribed CoQ10 and LDN. Results wise, he didn't claim exactly how you worded it. He said that IF the medication is helpful, then about 70% of his patients improves. I'll try the meds cautiously.
I invited him to this forum, I brought him the Welcome sheet. He said he didn't know if he'd have the time, to which I kindly said that I understand that, but that after all, he needs to stay on top of things to help his patients. Of course, he agreed
.
Covidivici
Established Member
Well that thread was a bummer (and a good read: thank you for leading me to it)It’s not just about resources though (and it’s not like we have an excess of resources either), but I won’t go through that here. If you’re interested in the topic, there’s a long discussion e.g. here:
MinIreland
Senior Member (Voting Rights)
@Covidivici, I so relate to your point that you got your self worth out of being useful. I totally found my passion in work and writing about it. Although I agree with you that 'useless' doesn't mean worthless, I must admit I am no longer sure what my worth is, apart perhaps from being a parent.
Utsikt
Senior Member (Voting Rights)
That used to be my view as well, it sucks to go from «maybe someone will be lucky if we try enough things» to «we have to do it the hard way and figure out what to target first».
Although it means that there are researchers out there that know how to maximise the probability of finding treatments as soon as possible. Instead of having hope based on false premisses.
It's not just academic ignorance that researchers have to deal with.
I shudder to think how many good researchers we have lost due to political churn. I've been witness to that churn for closing in on three decades. We've lost some good ones. It's demoralizing. Not surprising, though: brilliance and integrity and energy can wilt in the face of institutional friction and disdain from colleagues.
There's also resistance from state agencies and insurance concerns. Growls that come from the deepest parts of Legacy that resist change.
Of course, there's little in the way of money with which to conduct research and, you know, earn a competitive wage.
So, hey, whether you disagree with them or not, a huge Thank You to all the ones that have tried - and left - and to those that stay on and persevere, despite the stacked deck they've been dealt.
I shudder to think how many good researchers we have lost due to political churn. I've been witness to that churn for closing in on three decades. We've lost some good ones. It's demoralizing. Not surprising, though: brilliance and integrity and energy can wilt in the face of institutional friction and disdain from colleagues.
There's also resistance from state agencies and insurance concerns. Growls that come from the deepest parts of Legacy that resist change.
Of course, there's little in the way of money with which to conduct research and, you know, earn a competitive wage.
So, hey, whether you disagree with them or not, a huge Thank You to all the ones that have tried - and left - and to those that stay on and persevere, despite the stacked deck they've been dealt.
V.R.T.
Senior Member (Voting Rights)
That thread is definitely a bummer! I don't know whether you saw these comments from JE though:
So there is some hope in amongst all the bleak truth of that thread.
There is also the daratumumab phase 2 study just beginning in Norway which looks quite promising. There are several threads about it if you search.