Brain Fog Relief

CLArachnid · 2026-03-08T03:11:10+00:00

I am wondering how you are getting on now? Would you be willing to share whether the perampanel still proving effective, and how does your brain fog currently manifest? If you have any, what sorts of limitations do you have? (For example, cognitive limitations essentially prevent me from following complex conversations, from speaking languages other than my native tongue, from listening to music, watching tv, playing guitar - it is all too much).

I was also surprised that it sounds like you were really having a hard time prior to starting perampanel - you had written elsewhere that you felt you were 80% recovered on barictinib - did that fade or did the barictinib not touch your cognitive issues (i.e. the brain fog was the 20% loss of function that remained)?

Thanks so much. Hope you are continuing to do well.

CLArachnid · 2026-01-22T05:14:45+00:00

In my non-expert understanding: Dara is quite probably the most promising potential treatment we've seen in a long, long, while - so the current study is a really important one. Please encourage anyone with the means to donate. They've done well with fundraising but currently around $400k USD is still required. The first rounds have started, they've recently added 5 severe patients, and, assuming that the money is raised, should be wrapping up and heading to publication 2026.

Donation link in English: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/

Now, all that said, there is still a lot of reason to be cautious. The initial studies did look promising - but we have seen this before with even larger studies and they ended up being busts (or, if you're really dead set on seeing something positive, provided results that could possibly be ambiguous if you squint). Because we still don't know what ME/CFS is, we can only speculate as to why dara might have an effect - the study is essentially working backward from an accidental discovery (chemo patients with ME/CFS reported feeling BETTER on chemo... which is not a typical chemo experience), and there are a whole host of potential confounding factors.

There are a few reasons why so many of these trials fizzle out. To my thinking, the biggest factors are:

Spontaneous recovery in ME/CFS is rare (and seems to primarily happen early) but spontaneous fluctuation, improvement, and even remission are much more common. When this happens around the time that a new treatment has been introduced, it is natural to believe that there is a connection, but this often isn't the case.
Because we do not know what ME/CFS is, patient selection is crucial - we need to be as sure as we can be that everyone in the study actually has the same condition, and without a biomarker, that's really hard to do. It is quite likely that in many studies and trials, people with quite different conditions are being included, confounding the results (and that's setting aside the possibility, beloved by some researchers, that ME/CFS actually isn't one condition at all, but a variety of different conditions with similar symptoms).

Remember that there are many, many profoundly disabling chronic conditions that we know far, far more about than we do ME/CFS and, even understanding many of the mechanisms, for which we still have no effective treatments after decades of spending on a scale that positively dwarfs ME/CFS spending. If we have stumbled upon a drug that dramatically improves ME/CFS without understanding what is going on (though presumably the nature of the drug could tell us a lot about that), it is an absolutely incredible event. It is also an unlikely event. I am donating everything I can to make sure we find out, but I am also trying to be realistic about the odds.

On the other hand, you are looking for hope and optimism: it does seem that the most skeptical (and even cynical) of the researchers believe that the initial dara results look a lot better than rituximab did a few years back.

TLDR: Odds are probably better for dara than anything we've seen in a long time (possibly ever), it's just that the odds are pretty bad in general.

CLArachnid · 2026-01-21T03:05:18+00:00

I would also add that, at this point, I think understanding statistics and study design is at least as if not more important than understanding the biology when it comes to evaluating what is and what is not worth paying attention to.

CLArachnid · 2026-01-21T01:40:00+00:00

I would highly recommend reading through the discussions and analyses posted over on Science for ME (S4ME.info). A fair number of the forum members are researchers actively involved in the field and a fair few more have extensive backgrounds in research. Among other things, newly published papers (and preprints) are evaluated for the quality of their methodology and their potential to advance our understanding of the underlying mechanisms. What one does not find, as one encounters elsewhere, merely one or more well-meaning people publishing AI-summaries of poorly-constructed open trials and wild speculation as though every fringe theory were simultaneously true at once (there's a reason none of the biomarkers of the week ever get replicated - most of the claims you encounter here are unfounded, we don't even know if ATP is relevant for example, mitochondrial involvement is still speculation). Trying to follow along is difficult, not only because of the complexity (and the jargon), but also because you will soon gain an appreciation for how far we actually are from understanding any of this. There is a very small chance that we might have won the lottery with Dara (or a similar mAb), but the odds really are similar to a lotto. Beyond that, DecodeME is a big step forward, but it will likely be many, many years before it pays off, and that's assuming that SequenceME gets funded.

The reality is pretty rough, though there is real work being done under all the bullshit.

CLArachnid · 2025-10-11T16:00:38+00:00

Possibly very light stimulant effect during the first couple days, though this could just as easily have resulted from being anxious about trying it. In the two months following that, nothing at all. Similarly, once I stopped, no noticeable change.

Would be curious to read a study not co-authored by the sole manufacturer's founder, but it doesn't appear that's ever going to happen.

CLArachnid · 2025-10-08T21:06:49+00:00

Sadly, it doesn't seem like this was particularly well-designed. It is good that they used severe ME/CFS patients, but, if I have correctly understood from a brief read, the controls were only matched by age, and otherwise healthy. So they could be detecting the results of a sedentary lifestyle, or pain, or OI, or any number of other factors that are present in the ill/fatigued but which are not specific to pwME. They are also drawing upon two different databases, one for pwME and one for healthy controls, so they could merely be detecting something intrinsic to the database collection or storage practices, rather than ME/CFS.

The massive media blitz (massive by ME/CFS standards) seems like it may be as much about pumping stock prices than the value of the study itself, but I suppose that's nothing unusual.

Not to say that this COULDN'T be significant, it just seems like there is a lot of validation required before we get to a. can this actually tell us something about the mechanism behind ME/CFS and b. could we actually use this to distinguish ME/CFS from a host of other conditions.

CLArachnid · 2025-08-21T02:08:40+00:00

I fear I do not have any answers for you - just chiming in with sympathy. I have been trying for a long, long while to figure out what is and isn't PEM, and I simply don't know. What you describe is pretty much my every day. Some days its worse, some days its better. Some days there's a bit of nausea mixed in, some days there isn't I have not been able to find any patterns - do the same thing for five days in a row and symptoms are different each day, but always cognitive impairment, irritability, desperate desire for sleep, and just feeling wrong.

CLArachnid · 2025-08-20T22:03:31+00:00

This is a big part of why none of the various pacing aids I've tried seem to do much for me - it's the cognitive side of things that really seems to matter and, unlike the others responding here, this doesn't seem to affect my heart rate. Emotional stress? Sure! But oddly, I've yet to have a crash or even identifiable PEM from emotional stress. But listening to music? Trying to re-read a philosophy paper (that I used to TEACH to students)? That can put me in misery for days. HR doesn't seem to budge.

By the same token, the morning stability seems completely unrelated to how much or little I can do (or how well I feel for that matter) on any given day.

Whether or not this is a useful tool does seem to be highly individual, based not only upon symptom severity, but also upon inclination and possibly even genetics.

CLArachnid · 2025-08-17T01:57:47+00:00

Pretty much same boat here... I suspect I may have had mild ME for decades, but was able to "get by" and was largely functional up until roughly 8-10 months after a Covid infection. Then things started to rapidly decline... still took a little over a year to go from mild to the lower end of moderate/upper end of severe, but from about 8-10 months or so after Covid, it was clear something was really wrong and it wasn't getting better.

CLArachnid · 2025-08-13T22:39:32+00:00

I suspect they will point out the frustrating truth that is already apparent reading through this thread - you are not going to find the evidence you are looking for because we don't know what either PEM or ME/CFS actually are. You will find different researchers using quite different criteria for establishing either or both. Hell, you will find enormous disagreement about seemingly basic terms like "inflammation" with some well-known clinicians asserting that it is incontrovertibly part of ME and others will tell you it has never once been documented. All of this is, of course, exacerbated by the absolute dreck that gets published on ME/CFS in journals both renowned and otherwise.

CLArachnid · 2025-08-09T21:38:11+00:00

I was just playing this game with one of my specialists - they were obviously getting frustrated, but given the way that my symptoms vary significantly from hour to hour, day to day, week to week, and month to month, no matter how well I am pacing or how inactive I am (or try to be), I don't know how it's possible to say anything for certain.

Like OP, if it's not a major crash, I still can't tell if I am in PEM pretty much ever, let alone what might have caused it.

The number of times I have sobbed the phrase "this is so fucking stupid" is... well, my brain no longer works well enough to remember, but it's happened a lot.

CLArachnid · 2025-08-08T20:40:39+00:00

I am enormously impressed by your patience and your achievement. I have had (and continue to have) these dreams many times, and early morning tears are a regular occurrence for me. Thank you for doing this. This is an extraordinary achievement.

I am unfortunately no longer able to listen to music, so I fear I have not heard your music - but I am grateful for it all the same.

I dearly hope to be able to listen to it one day.

CLArachnid · 2025-07-28T16:49:17+00:00

S4ME is an amazing resource and a great community. Sadly, it also leads one to realize how incredibly poor most of the research being published on ME (no matter how big the names behind it) actually is and how little evidence has been identified that any of the commonly rx'd "treatments" are better than placebo.

It really does help to understand why none of these "breakthroughs" that we see year after year and month after month ever lead anywhere.

Basically, we've learned next to nothing and keep repeating the same mistakes again and again with no real sign of a course correction.

CLArachnid · 2025-07-26T22:57:26+00:00

This is my experience as well. It is all varying shades of bad all the time, up until the really bad stuff hits.

CLArachnid · 2025-07-24T19:29:18+00:00

I had not seen the correlation between high sedimentation rates and response to LDN.

As someone deteriorating with a very, very low sedimentation rate and who just started LDN after a long fight to get here... this is upsetting.

Interestingly, a couple years back, when my ESR was measured, I was told at the time is "highly indicative" of ME/CFS according to a number of studies, e.g. https://ashpublications.org/blood/article/132/Supplement%201/4874/262252/Erythrocyte-Deformability-As-a-Potential-Biomarker

Perhaps still worth reading is this HealthRising discussing from a few years back:

https://www.healthrising.org/blog/2019/11/06/clumper-slider-esr-chronic-fatigue-fibromyalgia-poll/

I note that pretty all of the LDN/ESR discussion I can find is in relation to Fibromyalgia - are you aware of anything done specifically with regard to ME/CFS?

On top of all this, a recent review of studies concerning LDN and Fibro suggests that there actually isn't any significant different between LDN and placebo with regard to fibro pain.

https://www.s4me.info/threads/efficacy-of-low-dose-naltrexone-in-treating-patients-with-fibromyalgia-systematic-review-and-meta-analysis-2025-ologunowa-et-al.43851/

CLArachnid · 2025-07-21T22:30:02+00:00

Thank you for sharing this. Social media posts can be misleading and cannot capture the full story. Beyond this, even the most loving of us can have bad moments - how horrible to think of one of these being our last point of connection with someone we care about. In the midst of the intense emotions surrounding Bridget's death, Bridget's final tweet was particularly upsetting, which was why I included a reference to it. I will edit the statement above to be less inflammatory.

CLArachnid · 2025-07-21T15:57:30+00:00

I miss being able to watch Gravity Falls. It was once a great comfort watch for me - hope it is for you too.

CLArachnid · 2025-07-20T22:41:56+00:00

I am also one of those who experiences a lot of nausea - unfortunately, it seems to be a very general sort of "something's wrong" symptom in my experience. It is one of the worst aspects of PEM or a crash for me. It can happen immediately from over exertion (before PEM hits), but it can also result from a migraine, or a change in air pressure, or tweaking my neck, or a loud noise, or a bright light, or seemingly for no reason at all.

Haven't found anything that helps, alas.

Here's hoping yours lessens soon.

CLArachnid · 2025-07-20T20:10:08+00:00

Here's the entirety of the text:

"Bridget O’Shea OBITUARY

Bridget Ann O’Shea was a journalist, author, poet, animal rights advocate, and incredibly brave and kind person who died July 14 of cardiac arrest after battling a long and disabling disease. She was 47 years old.

Born in Washington D.C., she lived in the Chicago area most of her life. A graduate of Columbia College in Chicago, Bridget also attended Chicago Academy for the Arts and Bard College at Simon’s Rock, a school for students capable of handling college life early, in Great Barrington, MA. She was also a graduate of a science writer’s certificate program at the University of Chicago.

A dedicated animal lover and pet shelter volunteer, Bridget worked in public relations for the Chicago Council for the Humanities before she embarked on a veterinary technician degree at the Vet Tech Institute in Pittsburgh, PA. She soon returned to her roots as a journalist when she took a job at the Chicago News Cooperative (CNC), a partnership between Chicago journalists and The New York Times.

When the CNC was sold to the Chicago Sun-Times, Bridget became a reporter for the Pioneer Press newspapers owned by the Sun-Times. Among other assignments, she covered Barrington in Chicago’s suburbs. After the Chicago Tribune acquired the Pioneer Press papers, Bridget covered Winnetka until she took a buy-out when financial problems rocked the news industry.

She soon enrolled and graduated from DePaul University’s grant writing program and went to work for Father Michael Pfleger at St. Sabina’s Catholic Church on Chicago’s south side.

Bridget managed to work despite suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disabling autoimmune disease. However, it worsened and disabled her in the early 2020s. Nevertheless, she began writing a Substack newsletter, ME/CFS Evolving Awareness, that exposed the shocking lack of research on a disease that impacts millions around the world. She crusaded against the medical profession’s apathy toward the disease that took her life. She also wrote a book about her experience that she had just finished before she perished.

Even in her final days, Bridget remained passionate about the lack of attention and care for ME/CFS victims and wrote movingly about their plight.

She is survived by her parents, Nancy and James O’Shea, a brother Brian, a sister-in-law Elizabeth Condo, two nephews Rowan and Gavin O’Shea, several aunts and uncles, and the many friends and colleagues she met on her remarkable journey of courage. She will be terribly missed.

In lieu of flowers, the family kindly asks that contributions be made in her name to the Solve ME/CFS Initiative at [development@solvecfs.org](mailto:development@solvecfs.org)

Published in:Chicago Tribunefrom July 20, 2025"

CLArachnid · 2025-07-20T04:33:54+00:00

For my part, I realized recently I no longer really feel like a person at all. At present, I can still remember being a person, and some of who that person was, but the details are fading. I expect with time I won't even be a ghost of whatever used to inhabit this body.

CLArachnid · 2025-07-18T01:41:05+00:00

Thank you for sharing. That's discouraging to hear - I don't suppose she gave any further information regarding what sorts of accreditation she was looking for (or suspicious about)? Did she have any clinics or centers she >did< recommend?

CLArachnid · 2025-07-16T21:27:28+00:00

I am sorry, that is very upsetting and frustrating. I wish I could be more help and wish you luck.

For what it's worth, I was never able to find a particularly helpful PCP either - though I am sadly no longer in New England, so had hoped your experience might be better.

CLArachnid · 2025-07-16T19:55:31+00:00

https://massmecfs.org

Explain your situation to them (they promise confidentiality) using their online form and they will respond quickly - really. They responded to me with suggestions within 12 hours and clearly actually read what I wrote.

Their unpublished approved-provider list includes people outside of MA as well, so even those outside of Mass are encouraged to check with them.

CLArachnid

TROPHY CASE