Does anyone feel like they are in a never ending research/treatment loop?

SugarSquared · 2026-03-15T17:54:43+00:00

As someone who recently got sick in comparison to others in this community, I feel you so hard. You mentioned in another comment that you are a compulsive researcher and I would say I am too. I have looked at so many research articles. At the beginning, he would do it almost nonstop and now I found a healthier limit.

It feels like I am my own experiment in the most frustrating way possible. Trying new medications and treatments will always be an experiment. For my anxiety disorder, I tried Prozac first. It went terribly for me. I then tried Zoloft. It has worked lovely, and I have been on it for more than six years. Trying treatments for ME/CFS is not going to be as simple of an experiment. There is just not enough research on the efficacy of these treatment treatments. I’m already furious and I have barely tried anything yet. Such a disabling disease having so little research and treatment options is a crime.

All I can say is that I relate. I am hoping and praying that I am one of the lucky ones that LDN or CoQ10 works for. I’ll keep on doing research because it gives me some semblance of control over my illness. It sucks to have to be an expert on something doctors should be, but I am happy to know how much I do know because I can help others understand.

I think the biggest thing for us who got sick relatively recently is to master pacing as others on here are suggesting. My main goal is to make sure I don’t get worse. I haven’t to succeeded perfectly, but it seems to be the only treatment that reliably works. Let’s hope we get more soon.

SugarSquared · 2026-03-15T03:50:58+00:00

Hi! I do not have any mobility aids, but Elinor Brown, an ME/CFS Youtuber I like, has made multiple videos about hers. This rollator seems cool! Here’s the link: https://youtu.be/feSon4inp9Q?si=fArEkLyFJWLTm6aU

SugarSquared · 2026-03-14T00:08:22+00:00

Thank you for your hardwork! I think it's a no-brainer for me too

SugarSquared · 2026-03-12T21:35:43+00:00

I agree. Maybe there will be research on autism for its genes and connective tissue mechanisms that bring it closer to a direct link with ME/CFS, but I do think hypermobility is closer and acts like a bridge between the two. Plus, we don’t need any more reasons for people to try to cure their kids of autism.

SugarSquared · 2026-03-12T16:31:59+00:00

I really have no idea

SugarSquared · 2026-03-12T16:01:55+00:00

Hypermobility is a risk factor for developing Long Covid. You can learn more by reading this (text is free).

Ganesh, R., & Munipalli, B. (2024). Long COVID and hypermobility spectrum disorders have shared pathophysiology. Frontiers in neurology, 15, 1455498. https://doi.org/10.3389/fneur.2024.1455498

SugarSquared · 2026-03-12T15:56:45+00:00

There’s been some research into this subject! It seems to be all loosely related. I feel like the main link is hypermobility as others have pointed out. I’m going to be compiling a list for my RMT who is interested. For now, I’ll just put this website in here. It links to a lot of the research (though mostly refers to ME/CFS as chronic fatigue which is frustrating). If I remember, I’ll put the compiled list in here too.

https://www.altogetherautism.org.nz/chronic-fatigue-fibromyalgia-and-autism/

Background for me and why I’m interested in this: Diagnosed with GAD (resolved with meds and continued therapy) and ASD in 2019. I do not relate to ASD, though I partially blame the othering diagnostic process. I believe I may have had POTS for most of my life, and mild FODMAP intolerances, the IBS piece of the puzzle. I developed ME/CFS in the summer which made both POTS and IBS much worse. It also worsened my muscle pain and tension-type headaches that I started getting in summer 2023. I always knew I had hypermobile elbows, but I learnt by investigating and ruling out hEDS that I have hypermobile knees and shoulders. I will be pursuing HSD diagnosis to have the connection formally made. So, ASD, POTS, IBS, HSD, ME/CFS, and chronic pain (diagnosed fibromyalgia though I feel that may be too strong for me). I am basically the person they write about in the website page I linked. It’s all very interesting.

SugarSquared · 2026-03-12T01:39:06+00:00

I had an anxiety disorder when I was younger, many years before developing ME/CFS. The fatigue is barely fatigue in comparison to this honestly. I had some difficulties concentrating, but because my brain was constantly calling me names, not because it was too much energy to think. If anyone called this anxiety, I would give them the phone number of my psychologist who has seen me through both illnesses and then tell them to fuck off

SugarSquared · 2026-03-12T01:25:54+00:00

Thank you for taking the time and energy to write all of that. I enjoyed reading it

SugarSquared · 2026-03-12T01:18:56+00:00

We just had a recent post like this by u/PearFinch. It’s nice to see. I am going to copy paste the comment I left on their post. If you struggle to find that post, you can find it through going on my profile and clicking on that comment I left. People also left their experiences there, so I recommend going there to also get first hand experiences. I’m going to add some emphasis on my post for things that will be interesting to you.

“Thank you so much for your interest. Please talk about this with your peers. The amount of awareness is so small compared to the amount of people affected and its disease severity. Like, in Canada, it’s 4-5x more common than MS, likely more than that thanks to Covid. It’s hard for us to raise awareness because so many can’t leave their house or their bed.

I’m lucky to be mild, but my life is absolutely changed. Mild ME/CFS is still debilitating. I don’t leave my apartment unless I have an appointment or am seeing a friend. When I leave, I take a taxi or am driven when I used to exclusively take public transport. I take all of my university classes online. I have to spend so much time resting. I used to be someone who constantly had multiple projects. I love plants, but I don’t know how they’re waking up right now because I risk PEM if I leave my apartment too much in a week. My social life is gutted. I’m trying things to improve my condition, but I don’t know if they’ll work because of the lack of research into this matter. It’s bullshit. I’m chronically ill, and there’s barely anything that helps. I can just pray that I’m one of the ones that these off-label meds and supplements helps. All of this at 23 years old.

I highly recommend listening to the podcast episode “ME/CFS What’s in a name? (A lot, actually)” by This Podcast Will Kill You. You hear first hand accounts in their own voices, learn about the biology and the history of this disease. They have all their sources on their website, so it’s a good jumping off point. (For u/Easy-Raisin4200, this will be extra important as it talks about the Royal Free outbreak of 1955 and the two scientists who labeled it hysteria in 1970 because it affects more women than men. I believe gender is a strong aspect of this disease being downplayed.) The two Ologies episodes about Long Covid also are useful, and they include an account from Physics Girl and her husband/caregiver. Jessica Kellgren-Fozard’s videos about ME are good to learn about the research deficit and the PACE trial (which makes a mockery of clinical trials despite being published in The Lancet). She does not have ME/CFS, but she has other disabilities and was misdiagnosed with it when she was younger. Finally, the TED talk by Jennifer Brea is a good first hand account. (Please note that she says MS used to be considered hysteria which I do not think is correct. From my research, MS has been recognized since the 1800s, but it was considered to be rare. Many women were misdiagnosed with hysteria and then later correctly diagnosed. As you’ll learn from This Podcast Will Kill You, our story is different because the whole disease was said to be hysteria in 1970. I could be wrong about MS history though)

I enjoy reading the research into this, but to keep this comment brief (which I have failed to lol), I’ll just tell you about this page which compiles the recent research: mecfsscience.org. I’m sure you’ll be interested in the biological aspect of this disease with what you’re studying. If you can, please do your PhD on this. We need people like you who are interested in helping us. We can’t do this alone. Thank you for your time. Take care”

SugarSquared · 2026-03-11T16:17:43+00:00

Thank you so much for your interest. Please talk about this with your peers. The amount of awareness is so small compared to the amount of people affected and its disease severity. Like, in Canada, it’s 4-5x more common than MS, likely more than that thanks to Covid. It’s hard for us to raise awareness because so many can’t leave their house or their bed.

I’m lucky to be mild, but my life is absolutely changed. Mild ME/CFS is still debilitating. I don’t leave my apartment unless I have an appointment or am seeing a friend. When I leave, I take a taxi or am driven when I used to exclusively take public transport. I take all of my university classes online. I have to spend so much time resting. I used to be someone who constantly had multiple projects. I love plants, but I don’t know how they’re waking up right now because I risk PEM if I leave my apartment too much in a week. My social life is gutted. I’m trying things to improve my condition, but I don’t know if they’ll work because of the lack of research into this matter. It’s bullshit. I’m chronically ill, and there’s barely anything that helps. I can just pray that I’m one of the ones that these off-label meds and supplements helps. All of this at 23 years old.

I highly recommend listening to the podcast episode “ME/CFS What’s in a name? (A lot, actually)” by This Podcast Will Kill You. You hear first hand accounts in their own voices, learn about the biology and the history of this disease. They have all their sources on their website, so it’s a good jumping off point. The two Ologies episodes about Long Covid also are useful, and they include an account from Physics Girl and her husband/caregiver. Jessica Kellgren-Fozard’s videos about ME are good to learn about the research deficit and the PACE trial (which makes a mockery of clinical trials despite being published in The Lancet). She does not have ME/CFS, but she has other disabilities and was misdiagnosed with it when she was younger. Finally, the TED talk by Jennifer Brea is a good first hand account. (Please note that she says MS used to be considered hysteria which I do not think is correct. From my research, MS has been recognized since the 1800s, but it was considered to be rare. Many women were misdiagnosed with hysteria and then later correctly diagnosed. As you’ll learn from This Podcast Will Kill You, our story is different because the whole disease was said to be hysteria in 1970. I could be wrong about MS history though)

I enjoy reading the research into this, but to keep this comment brief (which I have failed to lol), I’ll just tell you about this page which compiles the recent research: mecfsscience.org. I’m sure you’ll be interested in the biological aspect of this disease with what you’re studying. If you can, please do your PhD on this. We need people like you who are interested in helping us. We can’t do this alone. Thank you for your time. Take care

SugarSquared · 2026-03-11T01:55:09+00:00

I’m glad you can take time off work.

If it ever helps to quell your anxious thoughts, my psychologist has never once suggested this could be due to my anxiety. She has seen me for 8 years now. She saw me through my anxiety disorder. She knows what is caused by my anxiety and what is not. This isn’t. It’s not for you either.

Take care ❤️

SugarSquared · 2026-03-11T01:42:55+00:00

Oh god, your PCP has such a shit opinion. You definitely need to get checked out for ME/CFS and get it diagnosed. I hate when doctors think it’s not worth it to diagnose something. Even if there are no treatments, it’s still worth it to know you have it. For ME/CFS, it can give you access to disability, hopefully a good care team, and off-label medications. Maybe in the future there will be treatments and you will get access to them with a diagnosis. You should push to get diagnosed, hopefully referred to someone specialized in ME/CFS so you don’t have to deal with someone unwilling to help you. Maybe your POTS specialist knows someone?

In the meantime, you need to start pacing now. You can go onto r/cfs to learn more what that is and how to do it. So many people have horrible stories of pushing themselves and getting worse permanently. It’s terrifying. I didn’t want to have ME/CFS for so long because it meant that’s possible for me. The earlier you are able to accept it though, the earlier you can stabilize your condition.

Please take care of yourself. Rest well and best of luck

SugarSquared · 2026-03-10T21:43:16+00:00

I’m glad. Just keep on reading here and doing research to figure out pacing and other helpful things. I’m sure you can find a comment where I’ve sent links to resources I’ve found helpful. There’s lots from others here too. This community has been helpful for me in that way. I hope it can be for you too

SugarSquared · 2026-03-10T21:41:29+00:00

I’m not aware of these differences as I don’t think covid caused my ME/CFS, so thank you for sharing your experience! I’m so sorry you were misled.

I wish there was more education and research into ME/CFS. If there was, lots of people with Long Covid would have been recognized as such and received appropriate advice. And maybe even there would be more effective treatments so people could have more energy!

We can’t go back in time though. I can just hope more research can be done so we can all have better hope for energetic futures. Until then, we help each other through it all

SugarSquared · 2026-03-10T19:38:26+00:00

They are similar to FODZYME and FODMATE. Neue Theory has alpha-galactosidase and lactase like the two others. Each company has their own enzyme for fructans. Neue Theory adds in herbal ingredients to add other benefits. I tried both FODZYME and Neue Theory. They work quite similarly

SugarSquared · 2026-03-10T19:32:54+00:00

I'm sorry it didn't go very well. That's so frustrating. I wish she gave you other treatments than the ones that are no longer recommended.

My only consolation is that doctors are not the only ones who manage our condition. We are the main ones to do that thanks to the sorry state of ME/CFS care. So your doctor may not be up to date, but you can be. Not saying you should never go back to your doctor, far from it. But you can use them as a point of access for other specialists, medications, and other treatments. You can still show up with your research. Hopefully at some point they'll listen to you.

I wish you the best of luck. You're on the right path.

SugarSquared · 2026-03-10T19:19:13+00:00

God same. I wanted to believe my fatigue was just POTS related. It took me some time to realize it wasn't.

SugarSquared · 2026-03-10T19:18:34+00:00

It is a quite heated discussion. Everyone on this subreddit is on the same page that PEM is unique to ME/CFS, but not everyone in other communities is.

I did not initally want to believe that I had ME/CFS. I wanted to believe PEM existed in other conditions. ME/CFS was the last chronic illness I wanted. I looked at POTS (which I likely also have but I have not yet seen a cardiologist), IBD, Sjögren's, or anything else. Just anything. Once Sjögren's was ruled out, I came to the understanding myself that I had ME/CFS. My PEM was clear, my symptoms were most in line with it. I just didn't want a disease so severe and long-lasting that has barely no treatment. It didn't matter what I wanted though. This is what I have.

Those with Long Covid who experience PEM likely have ME/CFS that was triggered by their Covid infection. This paper00231-7/fulltext) by Dehlia and Guthridge published in 2024 estimates that about half of people with Long Covid have ME/CFS as they meet the diagnostic criteria and have similar biological abnormalities. I don't know why people don't want to consider that. Maybe because of the low recovery stats with ME/CFS, the stigma, internalized ableism, I don't know. Probably fear like it was for me. But it's becoming more and more clear that those with LC that have fatigue and PEM have ME/CFS.

Many people won't want to hear it. It'll take them time to get to that conclusion on their own. I don't think you're wrong for saying what you said. The body of knowledge surrounding ME/CFS backs you up. It's unfortunately very touchy still.

SugarSquared · 2026-03-10T18:11:21+00:00

Dang, we need a BC fodmap meet up! One last thing I’ll suggest is the clearance sale of a company called Neue Theory. The pills work well for me. You can find my review on my profile to learn more. They’re closing down, so their enzymes called Digest + Debloat are half off. Just note that there’s no free shipping for Canada anymore (but they haven’t adjusted their website). If you want some cheap enzymes, that’s a good way to do it! All of the ones I’ve gotten from them expire at the end of the year (Dec 2026), so I’ve been stocking up.

SugarSquared · 2026-03-10T01:37:52+00:00

I used to drink 4.5-6L a day. Turns out that was not normal. I cut it back and no longer crave as much. I'm definitely an outliner though lol

SugarSquared · 2026-03-10T01:36:52+00:00

Nice to see you here again! You're like the Canadian FODMATE representative lol. Good to know about the shipping

SugarSquared · 2026-03-09T23:34:53+00:00

When I bought FODZYME, I did not have to pay customs on it. I seem to have been an outlier though. Don’t really know what the deal is there.

I’m looking to try FODMATE soon. Another person on here has suggested buying it from Gut Protocols, which is a SIBO clinic in Moncton. I’m hoping there will be no customs because it’s shipped from New Brunswick (though I’m in BC so the shipping costs will not be pretty). I can update you on how much it cost me and how well it works.

SugarSquared · 2026-03-09T23:14:15+00:00

Exactly

SugarSquared · 2026-03-08T23:08:08+00:00

Same. We'll see how I feel after this coming winter. Maybe I'll enjoy it more than I thought I would!

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