This is an analysis of what recovered patients rated highly out of over a hundred treatments/interventions surveyed. The data suggests that extended fasting, ivermectin, black seed oil (nigella sativa), high ATA HBOT, statins, and Plaquenil/hydroxychloroquine are among the top treatments. Video: https://odysee.com/@LongHaulWiki:2/What-worked-for-those-who-recovered-Feb-2023:d Presentation slides: https://longhaulwiki.com/resources/assets/What-worked-Feb-16-2023.pdf
Previous dubious material by the same person linked and discussed here: https://www.s4me.info/threads/covid-19-vaccines-and-vaccinations.18066/page-54#post-455777 As far as I can see it's still just data collected informally from a very small facebook group who have experiemented with a range of treatments, so provides no useful or scientifically valid information.
I'm pretty sure Glenn Chan was the author of this video. I'm immediately suspicious of its findings because it lists ivermectin. Since it doesn't help in acute Covid and there's no evidence for it in long Covid, it tests the study's methodology similar to a placebo.
Yes, I did the research and put together the video. If I may politely ask... can we steer these conversations back on track? As you know... ME/CFS, Long COVID, etc. are all very serious conditions that turn people's lives upside down. We have an opportunity to put patients first and to engage in scientific discussions so that patients may someday find effective treatment and get their lives back. There is no need to engage in ad hominem attacks. Thank you. Maybe you have some thoughts on fasting, exercise (at different intensities e.g. light versus intense), graded exercise therapy, etc.
On graded exercise therapy, the answer is clear. Despite repeated attempts in large and small clinical trials with all sorts of variations in methodology, the conclusion is: 1. GET does not lead to any significant benefit to patients, regardless of how ME or CFS is defined. People don't get fitter, healthier or more able to go to work than people with no treatment. 2. People with ME or CFS or Long Covid that includes Post-exertional Malaise., also known as post exertional symptom exacerbation, who undertake graded exercise therapy get sicker, in some cases permanently. Therefore GET is ineffective, and for people with PEM it is harmful.
I agree we need scientific discussion. That's what this forum is for, and you are welcome to join the discussion. However, scientific discussion also requires honest appraisal of the validity and reliability of data, and of whether a set of data has been collected in a way that can yield useful information or may mislead. And if the data looks worthless, to say so honestly. As an example of what I mean - we have a members only subforum here called Members Polls. Any member can set up a poll in that section to find out whether, for example, members have tried particular treatments and whether they found them helpful, or what particular range of symptoms we have. We deliberately make these polls 'members only' for good reason. They are not, and cannot be, useful as scientific evidence, because the treatments are not being tested against placebos in clinically controlled settings, and we are a self selecting sample, unlikely to be representative of all pwME. So we make it clear that the poll results should not be made public, or claimed to be scientific evidence. They are simply a tool for helping discussion and sharing experiences among our members. I would put the results of a poll like yours of 27 members of a FB group on a similar footing. It's in scientific terms of even less value than a few anecdotes, which themselves are at rock bottom on the scientific stakes. There is someone on Twitter at the moment who has set up a big survey of pwME and pwLC with a vast array of questions about treatments people are trying. Again, this is a completely unscientific way of finding out about the efficacy of treatments, and carries the real risk of harm from people reading the poll results and being encouraged to experiment with some potentially harmful treatments. It's the Wild West out there, with even supposedly responsible clinicians spreading all sorts of ill informed treatment recommendations based on no more than their own very limited experience or hearsay. That is what we set up this forum to fight against. So, I'm sorry, Glen, I appreciate that you have put effort into this, and have good intentions, but what you have done is not science.
My apologies if my comment was unclear. I didn't intend it as an ad-hominem attack. I meant the two comments to be separate. First I said "I'm pretty sure Glenn Chan was the author of this video." because it's important for people to know they're interacting with the author. I didn't mean to imply that I doubt the video's veracity because you created it. The second part is where I express doubt in the video's findings. I'm highly skeptical that ivermectin would do anything for people with LC because the scientific consensus is that achievable concentrations in vivo don't meaningfully inhibit the virus's reproduction. Nor is it established that actively replicating virus causes LC symptoms. Thus if people report ivermectin helped them, I see a high probability it's a placebo effect rather than an actual effect. If a study tested many therapies and found homeopathy was one of the most effective I'd be immediately suspicious too. From CBT/GET studies we know people will convince themselves their symptoms are less intense, or attribute natural improvement to the treatment, if they do something they expect to work.
I find it disturbing that you would attack people like @organichemusic for a honest attempt at gathering data. She is engaged in legitimate scientific exploration and there is no reason to attack people like her or to malign such work as carrying 'a real risk of harm'. While survey data is not as reliable as a double-blind clinical trial, to describe such surveys as "completely unscientific" is not justified scientifically. Surveys, passive surveillance of drug safety, retrospective observational studies, etc. are regularly used in medicine and science to collect data in a lower-cost manner.
An honest attempt at gathering data has to include making sure the results are not misleading. If the basics of scientific method are not clear to you @glennchan you might do well to steer clear of all of this. I suspect pretty much everybody on this forum is going to disregard everything you say now, having come out with that.
I would say the question is less about surveys and more about sampling methods. There is a huge issue if you ask a group of people what treatments they thing work especially if that is already a selected group. Their is a risk of bias both in the selection of the group but also in the "what they think works" in that this will tend to get positive answers. Even asking about experience with a given intervention of interest may still remain biased as people may well be more likely to push things they like (whether they had a positive effect or they tried them when they were improviing) - where as many are less likely to talk about failed tries and perhaps negative effects. So methodology is key in how data is collected. You don't talk about how your sample of 27 people were collected - although I would conclude from the number of things tried that the group tried a lot of stuff (which makes it really hard to interpret as well). Were things tried separately, in combination, what about delayed effects. What about a comparison with people who tried nothing. I.e. what is the p(improve|nothing) vs p(improve|<try1, try2....>) etc and then of course you need p(same| ...) and p(worse| ,...) but it is still hard to attribute anything with such small numbers with any real certainty. There is interesting work around drug repurposing for example where researchers are using AI techniques to trawl medical records so that they can form huge random sample sets and get a picture of positive/negative/null effects. Then
Observation is a legitimate part of the scientific process. So someone could think to themselves, I seem to feel better when I eat celery, for example. They might chat with 27 of their friends, and some of them might say 'yeah, I too seem to feel better when I eat celery'. So far so good, what you have is an observation that might be interesting. It is, however, not evidence that celery does anything useful. There is a problem if that idea is presented as anything other than an observation. There is a major problem if the treatment is expensive or risky or stops people getting effective help, and it is promoted as useful on the basis of a few anecdotes. Yes, a survey that isn't part of a blinded controlled trial can be an interesting observation. Being large (thousands of people) and having a sound methodology would make it more interesting. We see many surveys where questions can be written in such a way as to bias answers, for example. There also needs to be care with the selection of the participants - are they all from the celery growers association? If a survey finds that a large percentage of people suddenly were cured, and were able to resume their old lives, and were still well months later, that would be a lot more interesting than several people reporting having a bit more energy. But we've seen over and over how people can convince themselves that something helps, if they think it will. There is the Mendus study of CoQ10 for ME/CFS for example. Many people who received the labelled MitoQ CoQ10 supplement reported that it improved their energy, their sleep, their cognition. However, there was also a part of the study where people received unmarked pills - some the CoQ10 and some just an inert pill, a placebo pill. In this part of the study, the CoQ10 result looked just like the placebo result. Therefore, CoQ10, or at least that particular formulation with that particular dosage, did not help ME/CFS. It's a great demonstration of how people can convince themselves that a well-marketed treatment works. So, you can chat with 27 friends, and conclude that some people think a treatment helps. We do that often here. But it isn't scientifically sound evidence that it does help. We have threads for quite a lot of the treatments mentioned in the survey you linked. You might like to find them, read them, and add your own observations. If there is a treatment that you think is interesting and that we don't have a thread on, you could start a new thread.
I think it's important to understand the difference between attacking a person, which I have not, and would not do, and raising concerns about the scientific validity and usefulness or otherwise of any 'research' they choose to undertake. It's not about honest endeavour, it's about what data is being collected. There is a saying that crops up in every basic statistics course - gigo - garbage in, garbage out. My contention is that this type of data collection provides such flawed information that any analysis based on the data will produce garbage.
Hi @glennchan thank you for your posts — I agree with above commentary. I also hope we're soon getting beyond the era where patients are forced to do what they can to fill the void due to systemic medical and societal disinterest. As above, we do discuss things under a mantle of lower evidence levels and conjecture as @Trish notes (eg in members-only area) and that is appropriate — it's fine to explore and hypothesise. I don't think anything is ad hominem above, but I'm sure it might feel that way! I would encourage you to continue the wider discussion here. I'll add something that I think may be interesting that follows on from your post and survey. You may have a better understanding of this background than me (I'm reading in areas far removed from my remit), so do feel free to post new threads. I think Ivermectin has not been shown to be effective in LC (eg see this preprint thread), but I'm not sure it's purely the anti viral reproduction properties that people are interested in. Rather, its effects on autophagy/mitophagy promotion and various cell signalling pathways (many it might seem!). Of course this may (or not) impact viral reproduction, but there may be wider effects. Research into its potential for repurposing seems to be mainly looking at cancer. For acute Covid, in A cellular and molecular biology-based update for ivermectin against COVID-19: is it effective or non-effective? (2023), note the conclusion commented — See Ivermectin accelerates autophagic death of glioma cells by inhibiting glycolysis through blocking GLUT4 mediated JAK/STAT signaling pathway activation (2022) Ivermectin inhibits tumor metastasis by regulating the Wnt/β-catenin/integrin β1/FAK signaling pathway (2022) Progress in Redirecting Antiparasitic Drugs for Cancer Treatment (2021) Progress in Understanding the Molecular Mechanisms Underlying the Antitumour Effects of Ivermectin (2020) Ivermectin confers its cytotoxic effects by inducing AMPK/mTOR-mediated autophagy and DNA damage (2020) Ivermectin induces autophagy-mediated cell death through the AKT/mTOR signaling pathway in glioma cells (2019) Selective Autophagy of Mitochondria on a Ubiquitin-Endoplasmic-Reticulum Platform (2019) Ivermectin Induces Cytostatic Autophagy by Blocking the PAK1/Akt Axis in Breast Cancer (2016)
Not much joy for acute Covid either in this large study, fresh off the press: "These findings do not support the use of ivermectin in patients with mild to moderate COVID-19." Effect of Higher-Dose Ivermectin for 6 Days vs Placebo on Time to Sustained Recovery in Outpatients With COVID-19: A Randomized Clinical Trial
We really don't need at this stage of the ME/CFS game to be arguing about what is or is not justified scientifically, a process of data gathering that isn't amenable to testing within a falsifiable hypothesis isn't data of scientific value. That the process can be used to gather data of scientific value is irrelevant, though it must be said that there are vast numbers of dubious papers that are reliant on survey data alone. And that something can be scientific, doesn't mean that every case of its use is by definition scientific, to argue otherwise takes us into syllogistic fallacy. As regards the discussion here: https://www.s4me.info/threads/surve...id-treatment-survey-by-longcovidpharmd.31828/ no one attacked the pseudonymous Twitter account holder in personal terms. The methodology the account is following is flawed and the use of an unsubstantiated professional title is a claim to undue authority. Whatever the aims of the account holder their approach is neither professional nor scientific, no one should be reserved in pointing that out.
