r/openmecfs

Ill go first! Over this past week for the first time in 10 months (!!!!!), I washed a few of my dishes!

And yesterday I was able to clean 1/2 of my dogs teeth (like a dental cleaning). His teeth are in ruff shape because mama has not been able to take care of them, but now one side is squeaky clean again!

Next small win will be cleaning the other half. No more ratchet dog breath and I can stop calling him Stinky 😂😂

Would love to know yours!

Curious how people here are using AI tools, if at all.

Have you used AI for:

• Medical diagnosis
• Symptom tracking
• Health researching
• Summarizing research papers or clinical guidelines
• Preparing for doctor appointments
• Drafting messages to doctors, disability offices, family, or work
• Creating pacing plans or daily routines
• Organizing medical history/labs/treatment trials
• Comparing possible explanations for symptoms

What do you find it most helpful with? Has it ever steered you wrong with regards to health?

Are there any tools, AI or otherwise that you wish were available for helping navigate ME/CFS?

Can’t help but be a little disappointed that money is being spend on yet another LDN trial. We got news only a few months ago that LDN failed against placebo - https://www.reddit.com/r/cfs/s/iSWcfZTghN. I know people will say ‘it helps some people’. I don’t know what to make of that sentiment but I’m not sure it’s enough to warrant another trial. Dr Younger does allude to the recent results in this video but declines to comment saying he hasn’t looked closely enough. Reading between the lines it seems he might think there is an issue with them, but I’m only guessing.

Dr Younger also mentions they will be doing brain scans on patients to see if the LDN is altering anything there. This is welcome as we might learn something new, potentially even about the sub types that respond. Could this be the first step towards categorising subtypes? However, scanning during a trial is an unfulfilled promise I’ve heard previously from Dr Younger. A while ago, maybe 24 months (I’m guessing) he announced plans to scan patients with a radioactive marker to see if Leukocytes were crossing the blood brain barrier. He hoped to be done within 6 months. About 12 months later (again guessing the time frame) on a YouTube comment he said he was still waiting on getting access to the scanner to enable the scans as access was very competitive. He did the scans on controls years ago but hasn’t been allocated the scanner time to do the patients, as far as I know. He only plans n=4 patients so it’s frustrating to not even be allocated time enough for that small amount. From the video announcement today the brain scanning was the only bit to excite me so I really hope he gets access this time. I’m not hopeful though because getting allocated scanner time at the right time before and after the LDN dose at the correct intervals for multiple patients seems unlikely if he can’t even get allocated 4 slots at any time. I am a total outsider though and going off limited information so I could be reading too much into it and be complete off the mark.

I understand the research that gets funded gets done and we don’t always get to choose which study gets up. Also, if we didn’t get this trial funded there is no guarantee the money would get put to another ME/CFS cause so it’s not as simple as saying this is a waste of time and we should be doing something else. If it was the choice between this and nothing of course this study is better than no study at all.

No shade on Dr Younger at all, his is in our corner and doing his best. We are lucky to have him.

Just wanted to discuss this comment (as I can't discuss on r/cfs), as I see j_spru is a mod here:

https://www.reddit.com/r/cfs/comments/1r6mqm6/comment/oqr31di/

I think you misunderstood my comments, or we didn't get a chance to discuss. I don't have any beliefs about ME/CFS (dogmatic or not)...I just look at the evidence and see what it says.

Currently the evidence shows that both stressors and viral infections are precipitating factors, so it's certainly not true that "stress is the one and only cause of me/cfs". I'm not sure where you got the idea that I have that dogmatic belief. Sorry if you got that impression.

As for "evidence of biological or phisiological findings": there are some biological/physiological findings that have been replicated, such as lower cortisol awakening response, low HRV, low NK cytotoxicity.

We discussed mitochondria, and you seemed to think there was proof of mitochondria dysfunction, even though you admitted that none of those studies have been replicated. I used to think there were mitochondria dysfunction, but in the last year or so I changed my mind. So, I'm not sure if I any dogmatic beliefs.

Just checking through my emails, and I see in 2021 I emailed Karl Morten discussing potential research related to mitochondria, as that seemed to be one of the most promising findings, and I offered 10k of my own money towards funding. However I later looked further into the research and realised that it wasn't quite as promising as I had thought, so redirected the funding elsewhere.

Anyway, perhaps you should base your opinions/beliefs on the evidence, rather than the other way round. Changing your opinions based on evidence is good.

Also bear in mind that it is well established that stress causes changes in mitochondria (see reviews by Picard for example).

PS you seem to be a fan of r/cfs pile-ons. This one was particularly ridiculous as they screenshotted an out of context part of the discussion (which I then edited to clarify). I wasn't saying that pacing is bad, just that continually pacing and resting too much and avoiding activity can result in becoming bedbound. And then there's all the ridiculous and nasty misinformation and attempted doxxing, saying I make money or sell books (I don't do either), or that I recovered after just 6 months (I didn't, but it wouldn't matter if I had), that I used brain retraining or push it (I don't do either, and warn that it's a mix of science and pseudoscience). Overall r/cfs is highly toxic and dangerous, and I'm somewhat suspicious of anyone who even posts there, especially in a really nasty toxic thread like this.

Major new ME/CFS research project launched in Europe: DISCOVER-ME, led by MedUni Vienna, has received over €7.5 million from the EU Horizon Europe program.

The project will run for four years and aims to improve ME/CFS diagnosis and treatment by identifying biomarkers, biological subtypes, and potential targeted therapies.

Researchers plan to analyze data from 2,000 patients, plus biological samples from more than 700 ME/CFS patients and nearly 200 controls, looking at immune, metabolic, hormonal, mitochondrial, proteomic, and epigenetic changes.

One especially interesting part: the project will use disease mapping, computer models, and “digital twins” to screen more than 9,000 existing drugs, narrowing them down to 20–50 promising candidates for future research.

This is exactly the kind of large-scale, biology-focused ME/CFS research we need: better diagnostics, patient stratification, and a path toward mechanism-based treatments.

Source: MedUni Vienna
https://www.meduniwien.ac.at/web/en/about-us/news/2026/news-in-june-2026/me/cfs-international-research-project-launched-under-the-leadership-of-meduni-vienna/

**Post title should say non ME/CFS doctor

I am in Florida, and just had an appointment with a urologist at Shands, a major academic and teaching center. She was such a nice doctor - kind, patient, helpful, a fantastic urologist - but admitted to me that she had never heard of ME/CFS before... ever.

I am not surprised that not one single provider at my local hospital in the boonies had not heard of the disease, but I for some reason I thought doctors at major academic centers would have encountered the term before. She is a very niche urological surgeon, so maybe she really is just a super expert in her area.

Have any of you run into "regular" doctors that knew what ME/CFS was? At my 7 day hospital stay, I probably saw around 10 providers and who knows how many nurses and not one of them had heard of this disease.

I did go to a Minute Clinic at CVS once and had a nurse practitioner who knew what it was. That was a surprise, haha. It is just so crazy to me because this is my life. I live, breathe, and eat this disability and it seems like soooo many people have it.

My main physical symptoms are fatigue, burning skin and brain fog. It's pretty easy to respond well to them as they aren't harmful and I know my brain is in 100% control of generating these symptoms, so nothing caused by my actual body.

How do you respond well to mental symptoms though? Anxiety seems easier as you can sort of say "it's okay nervous system, lets calm down, we are safe" but what about depression and all the grief?

Some days I just try so hard to be positive but the depression encumbers me and I break down in tears. I will say things like "I just wanna get better, this would've not happened if I didn't catch that cold, it's not fair, I should be able to go outside and enjoy my pregnancy" etc. A lot of the thoughts/words are just pitying myself and being angry at others. After I cry I usually feel lighter, so I try to look at it as a good emotional release.

But man it sucks. Any advice?

Pacing is consistently among the top pieces of advice for new ME/CFS patients. But what does that actually mean and what does it look like for you day to day?

Do you use any kind of monitoring tools, symptom tracking, cutting tasks into smaller pieces, avoiding certain triggers, or is it mostly trial and error?

How do you know when you’re reaching your energy limit and it’s time to stop or rest?

Finally, any advice for those new to pacing?

No need to answer all of the above - just interested in people's thoughts.

Someone mentioned this on another sub, but I have been thinking the same thing for months! And I think its kind of hilarious and I am maybe 1/10th convinced that it is true, because I like to think that suffering is somehow metaphysically justified.

Anyways, when Im REALLY in the depths of the suffering void, I tell myself that being on planet Earth is a cosmic test that I have to pass for some greater purpose, like a sci-fi movie/book. As in, my soul was chosen (or self selected because I am clearly a masochist) to train on planet Earth and suffer dearly in order to prepare my psyche for what is to really come... which is more difficult.

And in order to pass, I have to not only endure the suffering, but do so with courage, mental strength, and fortitude. Only then can I earn my position in the elite, 12th dimension forces beyond all human comprehension.

And I am graded! The more I sulk, the lower my rank. And if I fail, my soul is annihilated and no form of me will ever live again.

Believe it or not, it kind of helps a bit.

What are yours?!

I'd be curious to hear people's onset stories.

How would you describe your ME/CFS or Long COVID onset?

Was it immediate or gradual? Could you identify any trigger? Did it start after an infection or virus, stressful event, pregnancy, surgery or illness?

What were your first symptoms? At what point did you realize this wasnt normal?

How long was it until you suspected or comfirmed that it was ME/CFS and how did you learn that?

Don't feel obligated to answer all of these questions - whatever you feel like sharing is fine!

It's often said that one of the most important goals of ME/CFS research is stratification - or identifying and defining the different possible subtypes of the illness.

ME/CFS is described as being heterogeneous - that is, it can look wildly different for different patients. Some have sudden onset while for others it’s gradual. Or sometimes (as in my case) it's gradual with a sudden 'drop off the cliff' at some point. Some have a clear viral trigger while for others it’s unclear what the initial trigger was. Some have more cognitive symptoms while for others it’s more about muscle soreness or orthostatic intolerance. Fatigue, GI symptoms, dysautonomia and nervous system sensitivity vary a lot among patients.

Not only that, but patients’ responses to current off-label or experimental treatments that are available vary massively - some report significant improvement while others say it barely moved the needle or not at all.

This raises an important question - are we looking at one illness with different modes of expression or multiple underlying illnesses that result in a similar syndrome corresponding to what’s described as ME/CFS and lumped under that one umbrella?

Clarifying this question is also very important for testing and clinical trials. For example, let’s say there’s one medication that only helps one subset representing 15% of the total patient population. If subtypes aren’t taken into account in the study and all of the participants are simply labeled as ‘ME/CFS,’ then the results could be diluted, washed out or not recognized as effective, even though they may be extremely effective for that one subtype. The trial could effectively ‘fail’ even though the treatment was nearly universally effective for a subtype.

It seems that stratification is one of the most important objectives towards developing and testing treatments in the future.

So is anybody working on this right now? Here’s a sampling of some of the ongoing studies whose aims are -at least in part- to tease apart ME/CFS subgroups:

DecodeME / SequenceME - These important studies are working on identifying distinct genetic patterns associated with ME/CFS. The idea is that this will uncover biological disease mechanisms and pathways which can be used to identify subtypes and treatment targets.

Selin / Gil / Kumar immune profiling - studying T-cell exhaustion, unusual CD4+/CD8+ T-cell populations, immune signatures, viral or autoimmune targets, and possible immune-defined patient subgroups.

Of note - the lead investigator Dr. Selin is an ME/CFS patient herself and has had the illness for over 50 years. In the recent webinar she mentioned that she came back from severe 4 times to continue leading research, most recently in 2021. What an absolute warrior!

Charité / NKSG treatment studies - testing treatments such as immunoadsorption, vericiguat, HBOT, and others while also looking for biomarkers and treatment responders.

INIM / Nova Southeastern - studying ME/CFS through clinical immunology, systems biology, genomics, neuroinflammation, microbiome/oxidative stress, and now environmental exposure/mycotoxin research.

Stanford / OMF - investigating possible mechanisms such as mitochondrial dysfunction, immune activation, pathogen/viral risk factors, red blood cell deformability, neutrophils, and vascular biology.

I believe in the near future we will see a shift in talking about ME/CFS treatments from ‘does this treatment work for ME/CFS?’ to ‘which subtype of ME/CFS does this treatment work for and why?’

I’d love to hear others’ thoughts on subtypes. Do you feel that ME/CFS is a label or syndrome consisting of multiple underlying subtypes? Which subtype do you think you might belong to?

Ill go first!

1. Eye mask

2. Quality ear plugs/protection

3. Body wipes

4. Pajamas

5. Migraine Ice Cap

6. LMNT Electrolytes

7. Dry Shampoo

8. Quality foot cream (my feet got sooo dry when I stopped walking so much!)

9. Audible subscription

10. A $25,000 power reclining custom made wheelchair, because I am the richest, best friend ever 😁😁😁

What's in yours?! (It does not have to be 10 things)

ME/CFS patients deserve discussion spaces that are open, evidence-aware, and safe from coercive recovery narratives.

Unfortunately, some ME/CFS-adjacent spaces are not really open discussion spaces. They present one illness model or recovery theory as the only acceptable truth, remove or ban disagreement, and frame skeptical or evidence-based questions as hostility. That is dangerous in any health community, but especially in ME/CFS, where many people are isolated, severely ill, frightened, and desperate for answers.

Disinformation does not always look obvious. It does not always look like spam or a miracle-cure advertisement. Sometimes it looks like polished language, confident claims, cherry-picked anecdotes, vague appeals to “recovery,” or theories presented as settled fact. Sometimes it is reinforced by moderators who punish dissent instead of allowing careful discussion.

That is not patient safety. That is propaganda.

The mission of r/OpenMECFS is to provide a different kind of space:

• recovery stories are welcome
• biomedical research is welcome
• pacing and disability discussion are welcome
• nervous-system, mind-body, and psychological approaches may be discussed, but they must not be promoted as guaranteed cures
• anecdotes, hypotheses, speculation, and evidence should be clearly distinguished
• no patient-blaming
• no cure absolutism
• no ideological purity tests
• no harassment, brigading, or doxxing

People with ME/CFS should be able to discuss difficult questions without being shamed, bullied, or banned for asking for evidence.

Hope matters. Recovery matters. Science matters. Lived experience matters. But none of those things require pretending that one moderator, one theory, one program, or one recovery narrative has all the answers.

This subreddit exists for open, good-faith ME/CFS discussion - not propaganda, not patient-blaming, and not enforced dogma.

What is ME/CFS?
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a complex, multisystem, debhilitating illness that disrupts the body’s energy production, nervous system, immune system, and cardiovascular regulation.

It is characterized by profound fatigue, post-exertional malaise (PEM) - a worsening of flu-like symptoms after even minor effort - unrefreshing sleep, cognitive dysfunction ("brain fog"), and often orthostatic intolerance (OI), where standing or sitting upright worsens symptoms due to blood-flow abnormalities.

ME/CFS affects up to 3.3 million people in the United States, and more than 20 million worldwide. More than 90% of people with ME/CFS are believed to be undiagnosed.

More than 70% of ME/CFS patients are unable to work and an estimated 25% or more are housebound.

Understanding ME/CFS
ME/CFS is recognized by the U.S. National Academy of Medicine (NAM, formerly IOM) as a serious, chronic, systemic disease - not psychological or “just tiredness.” The illness may develop after an infection, extreme or chronic stress, environmental exposure, or occur spontaneously, and can cause severe limitations in daily functioning - sometimes leaving patients bed- or home-bound.

Biomedical research points toward abnormalities in energy metabolism, immune signaling, autonomic nervous system regulation, and blood-flow dynamics. Studies have identified changes in cytokines, mitochondrial function, and cerebral blood flow that may explain hallmark symptoms such as PEM and OI.

The World Health Organization classified ME/CFS in ICD-11, under Chapter 8: Diseases of the Nervous System, within the code 8E49 Postviral fatigue syndrome**.** 

Common Symptoms:

• Post-Exertional Malaise (PEM) Worsening of all symptoms after even minimal exertion - often delayed by 24-48 hours. Patients often describe flu-like sensations, sore muscles and poision-like sensations throughout the body, along with extreme fatigue. The effects of PEM are seemingly disproportionate to the ammount of exertion. This should not be confused with DOMS (delayed onset muscle soreness) or deconditioning.
• Cognitive Dysfunction Difficulty concentrating, short-term memory problems, and slowed processing.
• Orthostatic Intolerance (OI) Lightheadedness, palpitations, or fainting when upright due to blood-flow issues.
• Unrefreshing Sleep Sleep that does not restore energy or relieve fatigue.
• Widespread Pain or Sensitivity Muscle, joint, and nerve pain that often fluctuates with exertion or stress.
• Other Symptoms Headaches, sore throat, lymph node tenderness, gut issues, temperature dysregulation, and sensory overload.

Diagnosis
There is no single laboratory test for ME/CFS. Diagnosis is clinical and based on characteristic symptom patterns and exclusion of other conditions.

The Institute of Medicine (IOM, 2015) criteria - now widely used - require:

• Substantial reduction in activity levels for more than 6 months due to fatigue.
• Post-Exertional Malaise (PEM).
• Unrefreshing sleep.
• At least one of: cognitive impairment or orthostatic intolerance (OI).

Diagnosis typically includes a detailed history, physical exam, and targeted testing to rule out endocrine, autoimmune, and infectious diseases.

Diagnosis Code
ICD-10-CM Code: G93.32
Description: Myalgic encephalomyelitis/chronic fatigue syndrome

Current Approaches & Treatments
While there is no FDA-approved cure for ME/CFS yet, a range of approaches help manage symptoms and improve quality of life. Treatment is individualized and focuses on pacing, sleep, pain control, and supporting autonomic and metabolic function.

• Pacing & Energy Management Staying within your ‘energy envelope’ to prevent post-exertional crashes (PEM).
• Sleep Optimization Sleep hygiene, melatonin, or low-dose medications to improve restorative sleep.
• Low-Dose Naltrexone (LDN) An immune-modulating therapy that may reduce inflammation and pain.
• Orthostatic Intolerance (OI) Treatments Fludrocortisone, midodrine, beta blockers, increased salt and fluids, compression wear.
• Nutritional Support Vitamin D, B12, CoQ10, magnesium, and antioxidants may support mitochondrial health.
• Stress reduction techniques such as meditation, Yoga Nidra, breathing exercises and other stress reduction techniques
• Emerging Therapies Research is exploring immunotherapies, metabolic modulators, and antivirals for post-infectious cases.

Conclusion
ME/CFS patients need to be believed, taken seriously, and treated with compassion. This is a real, biological, disabling illness - not laziness, weakness, "just tiredness" or "all in your head."

r/OpenMECFS exists to support open, evidence-aware discussion while honoring the lived reality of patients.

More information for Patients: https://openmecfs.org/patients

More information for doctors: https://openmecfs.org/providers

------------------------------------

Sources:
U.S. Center for Disease Controls and Prevention
https://www.cdc.gov/me-cfs/about/index.html

World Health Organization
https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome

Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

Stanford Health
https://med.stanford.edu/chronicfatiguesyndrome.html

Open Medicine Foundation
https://www.omf.ngo/what-is-mecfs/

INIM (Nova Southeastern University's Institute for Neuro-Immune Medicine) https://www.nova.edu/inim/research-studies/me-cfs.html

OpenME/CFS
https://openmecfs.org/mecfs

I recently joined the DecodeME / Sequence ME & Long Covid webinar and wanted to share a short patient-level summary.

DecodeME is a genome-wide association study (GWAS). It's main goal is to uncover the biological underpinnings or driving mechanisms of ME/CFS which will hopefully lead to new treatment targets.

In a nutshell, it compares DNA differences between people with ME/CFS and people without ME/CFS, looking for genetic variants that appear more often in the ME/CFS group. This can give researchers clues about which biological pathways may be involved.

According to the study, it looked at the DNA of 15,579 people with ME/CFS with the DNA of 259,909 people without ME/CFS, all of European descent.

The stakes for this study felt sky high. If no genetic signals were found, some people might have used that to downplay the biological reality of ME/CFS. Finding signals does not explain everything, but it strongly supports the idea that ME/CFS has real biological underpinnings.

The result? DecodeME identified 8 genetic signals / loci / genomic regions associated with ME/CFS risk. That is - 8 regions of the genome where certain genetic variants were more common in people with ME/CFS than in controls.

The authors of the study concluded that the results give ME/CFS a “firm biological foundation”.

Heritability was found to be relatively low at 9.5%. This means that genetic factors contribute ~9.5% towards the risk of developing ME/CFS.

Now the real work starts - the analysis of this data and the potential of translating the findings into treatment targets.

A follow up study called SequenceME is now underway and should yield and even richer and more complete dataset than DecodeME as it is a much deeper whole-genome sequencing study. In short - it will be able to see things DecodeME could not. Action for ME describes the sequencing approach as around 1,000 times more detailed than GWAS.

This study has been funded by a £4.75 million grant from the UK government. Full sequencing and analysis of 6,000 DNA samples is expected to be completed by early April 2027.

During the webinar's question and answer session I asked how software engineers can contribute to accelerating research efforts. They talked about how AI-powered tools, many community driven, have been very helpful in data analysis and allowing researchers to move faster than ever before.

That got me thinking - what bottlenecks exist right now between the research being done and the development of treatments?

- funding
- normalization of data sets across the varying studies adn clinical trials
- identifying subtypes
- translating genetic signals into testable mechanisms
- moving from mechanisms to drug targets and clinical trials

And which of these could I apply my software engineering skills to to potentially move forward?

I believe that these are among the most important studies happening in ME/CFS right now and it's exciting to see more support for them from organizations like SolveME, Action for ME as well as the UK government.

sources:
"Sequence ME & Long Covid: The Search for ME/CFS and Long Covid Biomarkers and Subtypes" webinar
https://www.meresearch.org.uk/decodeme-initial-results-published
https://www.actionforme.org.uk/sequenceme-first-of-a-kind-genetic-study/
https://www.meresearch.org.uk/sequence-me-research-project-awarded-4-75-million-government-funding/
https://www.healthrising.org/blog/2025/08/17/decode-me-biological-foundation/