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A few months where, from what I remember, they’d happen around 2-3 nights per week

I’m very sorry about your relapse. I don’t have treatment suggestions, but I wanted to add that I’ve also experienced myoclonic jerks like what you’ve described. They started about 10 years into my ME and would happen just as I was falling asleep. I’d snap awake, limbs flailing, feeling...

Whether it’s Ampligen, LDN, or CoQ10, it’s not uncommon to see pwME attribute the range of outcomes from popular treatments to (theoretical) differences in the biopathology of people’s ME. The logic goes: those who benefit from a treatment share some common feature of their disease process that...

Exactly. For context, the Twitter user in this screenshot is the main person behind this org. They frequently say disparaging and ignorant things about ME/CFS and pwME. They also claim to have previously run a “Lyme clinic.” Given that I’ve never seen them mention having medical credentials, I...

Merged thread A few months ago, the New Yorker published a piece about ALS—specifically, about the debate among patients and regulators over accelerated drug approval. ALS prognosis is very bleak—people tend to live for only a few years (or far less) after diagnosis. This changes the risk...

This is more a comment about Cort than the plausibility of apheresis specifically, but I wonder how much money has been cumulatively wasted on alt-treatment as a direct result of his blog over the years. It must be a ton, right? Really wish our community had someone in his role who was less...

I see this tweet as making these problematic claims: You don’t know what’s best for yourself. Baseline-raising ME/CFS treatment exists for those who want it. remissionbiome’s protocol works for most people. It feels manipulative to engender self doubt in people before plugging your...

I second EndME’s recommendation for a PCR test and Paxlovid and also recommend this website: https://peoplescdc.org/2023/01/10/what-to-do-if-you-have-covid/

The view I’ve come to over the years regarding ME research and treatment anecdotes, not through any special Truth Knowing process but just me muddling through best I know how with the biases and ignorance that entails, is that there’s a lot of noise out there (things which, when we finally...

I’m sorry to hear about your worsening health. I bought an iPad to replace my laptop when my illness became severe enough where using one was making me feel sick. I think that was mostly to do with the large screen. My iPad has a smaller screen and is less draining to use—however, my phone’s...

I believe Lyme misdiagnosis and mistreatment is an under-appreciated, urgent problem for the global ME/CFS community. My impression, informed in part by my own experience being misdiagnosed and mistreated for Lyme by a well known “Lyme Literate” doctor, is that someone with textbook ME symptoms...

I was able to read this paper thanks to a generous s4me user. I don’t want to fall afoul of any forum rules, so I’ll just say I’d be happy to pay their kindness forward and my PM inbox is open :). I think many of the arguments in this paper will be familiar to members of this forum and are...

Has anyone been able to read the full paper? I’d like to but can’t at that link and it’s not up on SciHub yet as far as I can tell.

While I agree this project is bad and anything less than a distancing statement from Solve is unacceptable, there’s some additional context to the fervor of the backlash this is generating on long covid Twitter. I want to share that because I don’t think everyone is aware of it. There is a...

[Soon, we will be formally announcing the launch of our new clinic: a center dedicated to recovery from complex chronic illnesses. In this clinic we will treat folks with conditions like #EDS, #LongCOVID, #MECFS and #LongLyme. We were incredibly intentional about the decision 1/] Anyone else...

The CDC with Walensky as its public face has consistently rolled back public health measures which kept COVID from spreading under the eugenic logic that people at risk of death/disability from infection are expendable.

This tweet from Hilda in July of 2022 cemented for me that she is not an ally of pwME in the sense that she doesn’t feel the moral weight or righteousness of our struggle and can’t be counted on to act in our best interest. Perhaps it was my mistake for ever believing she was based on her prior...

I shared this same CR article in an online community of mine hoping to protect people. For what it’s worth, here’s an explanation I received about how the claims in it are misleading and overstate the risks.

It may make her very easy to dismiss for people that are reflexively opposed to the structural and analytical frameworks she uses, but I think a rebuttal that substantively addresses her arguments, which I think are made coherently, would not be “very easy”.

He explains his highly idiosyncratic writing style at DwME as a necessary part of communicating with professionals. Yet these Twitter threads, meant to communicate with us non-professionals, are full of the exact same kind of unintuitive jargon and awkward writing. These Twitter threads (both...