Hi everybody! I’m new here. I’ve been struggling with MECFS for about a decade now. After years of seeing different specialists, I finally got a CFS and dysautonomia diagnosis from Dr. Susan Levine in New York City, an infectious disease physician with a lot of experience in MECFS. Unfortunately, my condition progressed after that, and for about four years, I was almost totally bedbound in a dark room. I even had to stop communicating verbally with my family for three years because they had difficulty pacing. I also had very severe mental health issues and often felt super negative. But over the past two years things started to turn around for me, and recently, I’ve been able to go down the stairs and walk outside again, which has been incredible. I think over the course of my journey, I tried over 10 different healing modalities. Felt gaslit a lot but just focused on figuring out how to get better. Recently, I’ve even been able to start working a little bit again part-time (I’m a UX designer and artist).

Just wanted to share this with other people who are struggling letting you know that it can get better, even if you have severe mecfs!

Today in 27 cities in germany are lying demonstrations for ME/CFS with public speakers from politics, science, and affected people.

Here are some first impressions

A year ago I was shaving my head because I couldn't care for my hair. I was bedbound and unable to literally do anything besides lay on bed in the dark. A good day involved doing some sticker books and listening to an audio book on slow.

6 months ago, we moved out of the moldy apartment that was making me sicker, and now I'm mild and going on a 10 day road trip (husband is doing most of the driving). I was even able to do a significant part of the prep and make the bed platform for our SUV.

Just wanted to share with some people who would get how huge this is. If there's mold in your environment, take it seriously and get out if you're able to.

(Not my real hair in the picture, I'm wearing a wig).

I hate the image that comes up when you google CFS. I wanted to draw something that conveyed better how the illness feels. I started this sketch years ago when I was mild/moderate and and still working. Now I can't work at all, but I finally went back to it to try to finish it. Now I feel different so I'm not sure it really conveys it totally right but it's better than just looking sleepy during lunch. Anyway just thought I'd share with people who can relate.

Hi guys! I’m one of the mods here and would like to welcome you to our sub! I know our sub has gotten tons of new members lately so I just wanted to say welcome and go over some basic stuff! I’ve seen a TON of misinformation going around on here so I wanted to clear up some stuff. Please read through the sub wiki, there’s tons of good info in there as well as an FAQ section . We get flooded with tons of the same questions that are answered in there.

Pacing: there is a great guide in the sub FAQ in the sub wiki. Please use it and read through it before asking questions about pacing!

This will likely involve not being able to work or go to school anymore unfortunately for most of us. It’s a devastating loss and needs to be grieved, you aren’t alone.

Diagnostic criteria: CDC site this gets asked a lot, but your symptoms do not have to be constant to qualify. Having each qualifying symptom some of the time is enough to meet the diagnostic criteria.

Some advice:

-Watch Unrest with your family/partner/whoever is important to you. It’s a critically acclaimed documentary available on Netflix or on the PBS website for free and it’s one of our best sources of information.

-do NOT push through PEM. PEM/PENE (Post Exertional Malaise/ Post Exertional Neuroimmune Exhaustion) is what happens when people with ME/CFS go beyond our energy envelopes. Here is an excellent resource from Stanford and the Solve ME/CFS Initiative it’s a toolkit for PEM avoidance. It has a workbook style to help you identify your triggers and keep your PEM under control.

Avoid PEM at absolutely all costs. If you push through PEM, you risk making your condition permanently worse, potentially putting yourself in a very severe and degenerative state. Think bedbound, in the dark, unable to care for yourself, unable to tolerate sound or stimulation. It can happen very quickly or over time if you aren’t careful. This disease is extremely serious and needs to be taken as such.

-absolutely do not do Graded Exercise Therapy (GET) or anything similar to it. It’s not effective and it’s extremely dangerous for people with ME. Most people get much worse from it, often permanently.

-the most common triggers are viral infections though it can be triggered by a number of things (not exhaustive): bacterial infections, physical trauma, prolonged stress, viral infections like mono/EBV/glandular fever/COVID, sleep deprivation, mold. It’s often also a combination of these things. No one knows the cause of this disease but many of us know what our trigger was.

-the “brain rewiring/retraining programs” are all harmful, ineffective, and are peddled by charlatans. Gupta, Lightning Process (sometimes referred to as Lightning Program), ANS brain retraining, Recovery Norway, the Chrysalis Effect, The Switch, and DNRS (dynamic neural retraining systems), Primal Trust, CFS School. They also have cultish parts to them. Please do not do them. They’re purposely advertised to vulnerable sick people.

-this is not a mental health condition. It’s a very serious neuroimmune disease.

-we currently do not have any FDA approved treatments or cures. Anyone claiming to have a cure is lying. However, many medications can make a difference in your overall quality of life and symptoms. Especially treating comorbidities. Check out theBateman Horne Center website for more info.

-most of us (95%) cannot and likely will not ever return to levels of pre-ME/CFS health. It’s a big thing to come to terms with but once you do it will make a huge change in your mental health.

-only see doctors recommend by other ME/CFS patients to avoid wasting time/money on unsupportive doctors

THINGS TO HAVE YOUR DOCTOR RULE OUT

Resources:

I’ve collected these resources over the past couple of years, and these are all of the best ones I’ve found.

https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html

http://solvecfs.org/wp-content/uploads/2018/01/SMCI_infographic-Dec2017.pdf.

severity scale: https://img1.wsimg.com/blobby/go/1fd7e668-7095-4ec5-8e16-6f37d31759e6/downloads/Hummingbird-Scale.pdf?ver=1696871392312

This book was super helpful for my family and me to understand my illness: https://www.amazon.com/dp/0897932803/ref=cm_sw_r_cp_api_bOIxBb3163914

https://www.meaction.net/resources/reports-and-fact-sheets/

https://www.unrest.film/

https://health.ny.gov/diseases/conditions/me-cfs/

https://www.nap.edu/resource/19012/MECFS_ReportBrief.pdf

http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf

http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

This one has good guides in case need to be in the hospital etc but can also be helpful to help someone you love with understand your needs: https://www.thegracecharityforme.org/documents/

https://solvecfs.org/in-the-news-medically-documenting-disability-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-cases/

https://solvecfs.org/in-the-news-medically-documenting-disability-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-cases/

https://jamanetwork.com/journals/jama/fullarticle/2737854

https://howtogeton.wordpress.com/social-security-disability/

https://link.springer.com/article/10.1007/s11682-018-0029-4

Edit: Some more sites to look through are: Open Medicine Foundation, Bateman Horne Center, ME Action, Dysautonomia International, and Solve ME/CFS Initiative. MEpedia is good as well. All great organizations with helpful resources as well

Edit 2: finding an ME/CFS specialist or getting on a waitlist for a well respected one is very important if it’s possible for you in the US. There are only a handful of them and most of us have to travel to see them or only do telemedicine. The biggest ones are: Bateman Horne Center in Salt Lake City; Center for Complex Diseases in Mountain View, CA; Stanford CFS Clinic, Dr, Nancy Klimas in Florida, Dr. Susan Levine in NYC. I know there a some more I’m missing but those are most of the big ones.

Edit 4/22/21: the new US ME/CFS Clinician Coalition Recommendations for ME/CFS Testing and Treatment was just released!

SPECFIC TESTING RECOMMENDATIONS

TREATMENT RECOMMENDATIONS

severity scale

Hi everyone, Harry here.

Building Visible has been one of the greatest opportunities of my life. I’m grateful for the impact our team has every day, and for the trust this community places in us.

Recently, we got something wrong, and I am truly sorry. I hear the pain, anger, and sense of betrayal this has caused.

For those of you following, we had introduced a new ‘Clinical Trials Near You’ feature 2 months ago, which was done with the best intentions: to surface all clinical trials from a central registry (clinicaltrials.gov) for people with these conditions, so we can accelerate research at scale. This was built and made available for free to all users of Visible, across the globe.

Members of this community, and our community at Visible, raised concerns with me over the weekend that certain trials appearing in the central registry, and therefore appearing within the Visible app, were authored by researchers whose views are actively harmful to this community. In particular, a trial being run by Trudie Chalder.

I want to be explicitly clear on where we stand, because my previous comments were not enough:

• Visible does not endorse, partner with, or agree with the views of Trudie Chalder.

• We specifically reject her work on Graded Exercise Therapy (GET). We know this is a harmful narrative that has been rightly debunked, and we know the damage it has caused to the ME community.

By simply scraping *clinicaltrials.gov* we inadvertently created a tacit endorsement of this researcher. Our disclaimers in the app were not enough to dispel this tacit endorsement.

I also want to address my initial response. I reacted defensively to the idea that we were ‘partnering’ with these researchers, and in doing so, I missed the bigger picture.

What we are doing now

For now, we are have temporarily turned off the Clinical Trials Near You feature. We have taken this action instead of removing an individual trial, because it is likely that other trials could have similar concerns raised. There are thousands of trials in the central registry, with many more being added each week. If we tried to review and approve all of them we would delay access to research and inevitably miss things. Instead, we are going to explore building a mechanism to support community moderation of trials.

We still believe that connecting patients with research is vital to finding treatment options and ultimately, a cure. We will bring this feature back, but only after we have built the necessary guardrails.

Moving forward
It is consistent with our values at Visible to change our mind when the community tells us we are on the wrong track.

I’m incredibly grateful to this community, and I owe a personal debt of gratitude to the ME community in particular. Without the work tirelessly done by this community over the decades, my own experience with complex chronic illness would have been even more difficult than it already has been.

Thank you for holding us accountable, and for helping us build something better.

Best

Harry

Sorry, looks like I suck at taking photos.

But the event was pretty packet. There were some amazing speeches. Info merch and booths everywhere.

Last Photo was a billboard just outside the biggest train station in Switzerland, with about half a million commuters per day.

The text reads something like: "Enjoy the fresh air for me. Damaris (44) has ME/CFS. Her life takes place entirely at home. Help us defeat this neuroimmunological illness"

Last year around this time I posted that I finally got to see the ocean after a year inside. Today, after another year inside I got to finally see the ocean again. My ME/CFS is severe and I’ve only been out for hospital trips and such, so going out only because of my own enjoyment feels incredible. I think this must be the best day I’ve ever had since getting ill. Smelling the salty ocean and feeling the warm wind in my face felt like a dream. I enjoyed every single second of it. My most favorite thing to do in the entire world is to swim in the ocean. I really wanted to but I’ll have to save that for another time when I feel better.

I thought I’d share some self portraits I’ve drawn recently.

Drawing takes a lot longer than it used to, and I don’t have the energy to make polished work anymore. The way I see it, though, is that quick and rough work is still so much better than AI, or no art at all.

I love seeing what ME/CFS folks make with the little energy that we have, so I thought I’d share 🤍

So this was crazy and I need to thank this sub especially. You guys gave me the first traction, and because of this the spotify algorithm just picked it up and sent it to the right people. So many messages saying they now know about our disease have reached me, which was my goal. I am so glad!

This is now 4 months ago and today I was able to release my next album, which is called "live a little". While the first album was about our situation, bound to bed and left in the dark, this one really is directed to all the healthy people that are stuck in their routines. Let us be a reminder for them, that one day everything can change and you just wish to be healthy again!

I am not sure if leaving a link is allowed here, but if you want to support this album again it would mean the world. Its soft drum and bass, but full of emotions and beautiful harmonies.

Sebass - live a little

I've been pacing and resting extra hard recently in order to enjoy my birthday this year. Almost all of my online friends were at a convention together during it, and I really didn't want to sit alone while everyone had fun without me.

So I made a plan to go to an art faire since I haven't been to go to any the in the last 10 years. (I'm an artist) I also had help in order to dye my hair back pink after I posted the other week about how much I chopped off! I think it suits me :) I even bought myself a little birthday gift to celebrate this achievement!

I'm spending the next several days in bed to make sure I don't crash too hard, but I'm very happy I managed to be able to do this.

Lastly, for all you bedridden and allergy-hell peeps here, I took pictures of the flowers blooming for you all to enjoy <3

(Last photos are me and what I got myself)

@_heatherlynn tweets “a lot of healthy / non disabled people don’t realize how much suffering you can do and not die”

I honestly think if more people understood the depth of suffering you can experience while not being in any threat of dying, then we would be taken so much more seriously and actually have research funding and treatments.

Like the physical suffering of very severe mecfs is unimaginable and it’s so hard to genuinely face someone suffering that badly, it’s heart shattering. So instead of facing that truth people tune it out with toxic positivity and denial.

The new guidelines for ME/CFS and long COVID with PEM in Norway are proposing that ME/CFSas a diagnosis and long COVID with PEM, should be categorized as general fatigue. This can lead to difficulty with getting funding for biomedical research, correct treatments and advice, and a diagnosis for ME/CFS/LC.

Therefore tons of people showed up to protest against it earlier today. Along with almost 500 people who watched the livestream and almost 200 who joined the teams meeting. Norway is a small country so this was overwhelmingly a lot of people. There were incredible speeches and live music about living with ME/LC. The whole livestream made me shed a few tears as I watched.

(Writing this in PEM so I’m sorry if anything’s unclear. Just wanted to quickly share some positive news. Edit: I’m sorry I forgot to include long covid in the title but they were also there)

I am asking for your help to spread my story and generate awareness for this disease and the systemic failures surrounding it.

I have been suffering from severe ME/CFS since a COVID-19 infection. While my trigger was Corona, this multisystem disease can be caused by various viral or bacterial infections. The average quality of life for those with this illness is extremely low, asshown in the study attached/linked.

However, there are severe cases like mine where the suffering reaches levels of agony that are unimaginable to healthy people.

Because of this illness, I have an extremely limited energy envelope. I am bedbound 24 hours a day and cannot move much. It must be permanently dark because I cannot tolerate light. I wear double hearing protection because I cannot tolerate sound. I cannot watch TV or look at videos on my phone for even a second; moving images overwhelm my nervous system and cause unbearable pain. I cannot listen to music or podcasts. I can’t even talk to my own mother, who cares for me, because listening is too exhausting and speaking has become impossible. I have to communicate using a pen and paper. I can only use my phone for a few seconds or minutes at a time to send messages—sometimes not at all. (This message was recorded/prepared in advance under great agony.)

Going to the bathroom is difficult; showering is currently impossible due to extreme physical weakness and sensory overload. Receiving visitors or talking to anyone is far too exhausting and causes immense suffering.

But that isn't the worst part. The worst part of this disease is the core symptom: PEM (Post-Exertional Malaise). Every tiny exertion beyond my limits leads to a "crash" and a permanent worsening of all my symptoms and my general condition. Every attempt to "live" a little is paid for bitterly, leaving me in a worse state than before.

Even just lying in bed, alone with my thoughts, I have to be careful. Thoughts that are too positive or too negative can trigger a crash and a deterioration of my state.

Worse than the limitations that reduce your life to "sleeping or trying to sleep" is the physical pain. I would describe it as drowning and burning at the same time. It is always there, but it peaks during crashes. The body thinks it is dying because it has run out of energy, triggering a state of extreme distress.

It gets so bad that many feel there is only one option left. Many see no way out, and the suicide rate is extremely high. My condition is also heading in a direction where I might soon require artificial feeding.

Therefore, in 12 days, I will be utilizing assisted suicide.

But my death should not be in vain. In Austria, this disease now affects around 1% of the population—almost eight times as many as MS. Yet, because of their limitations, those affected disappear completely from public view and cannot speak up for themselves.

THERE IS NOT A SINGLE LICENSED MEDICATION FOR THIS DISEASE. In Austria, there is not a single specialized contact point or clinic, even though 1 in 100 people is affected. Most doctors don't even know the disease exists. The PVA (the Austrian state pension insurance) has called us "charlatans" and "free-riders." Many sufferers receive €0 per month. Not a cent from the pension system, not a cent from unemployment benefits.

That is why I am asking you: spread my story. Get it into the media. Share it on social media. Help me use my death to bring attention to this horrific disease!

My message is: ME/CFS KILLS!

TL;DR: Terrible disease, no medical care or support for many sufferers. I am taking advantage of assisted dying in 12 days and ask you to help generate awareness and bring my story to the media.

Last year I married my wife after two years of dating. I thought I'd share my story as a positive story of dating with CFS. I've had CFS for 20 years. I was on the more severe side for a long time. Marriage and dating seemed like it would be so nice, but it seemed like it would we be so hard to achieve and I wasn't sure if it was possible. I can only speak to my own experience but I just slowly started to work toward that goal. Working on trying to slowly improve my health little by little. Extreme pacing and some medicines helped the most. I'm still quite affected by CFS, more on the moderate scale and can't work, but I was finally able to start trying dating. I was so nervous and not sure how to present and talk about my illness. The big breakthrough for me was just being totally upfront about it in my dating profile which put me at ease and made me feel like I wasn't hiding anything. I met my now wife on my fifth date and we've been together ever since and we got married last year at a small ceremony with our families. We even got a little loveseat for the ceremony so I wouldn't have to stand the entire time. I feel so incredibly lucky to have found my wife. She's amazing and I couldn't be happier. Everyone's situation is different, but don't give up hope that it's possible you can find love while you're sick and that you're deserving of love.

That you may feel seen ♥️

I’ve just been able to go for a very quick walk along the river near where I live. This photo is for everyone bedridden right now so you can share this lovely moment with me and it can be yours too.

TLDR: Your genes contribute to your chances of developing ME/CFS. They found eight genetic signals, which include the immune and the nervous systems, indicating immunological and neurological causes. They found nothing to explain why more females than males get ME/CFS.

The DecodeME team is delighted to announce that the initial analysis of 15,579 DNA samples is complete, and we have important news to share.

Main findings from our analysis

Your genes contribute to your chances of developing ME/CFS.

People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population. These lie in many places across the genome, and do not impact just one gene.

Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS. The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease.

At least two of the signals relate to the body’s response to infection. Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS. These signals align with how people with ME/CFS describe their illness.

Extra info:

Three of the most likely genes produce proteins that respond to an infection. Another likely gene is related to chronic pain. None are related to depression or anxiety. We found nothing to explain why more females than males get ME/CFS. Overall, DecodeME shows that ME/CFS is partly caused by genes related to the immune and nervous systems.

Link to full statement with preprint: https://www.decodeme.org.uk/initial-dna-results/

My parents didn't give a shit. I finally opened up to them about how difficult this semester has been-- not only the long COVID, but being stalked and harassed, trying to get an F expunged after my accommodations weren't given to me, bouncing between doctors and emergency rooms and slipping back into depression. I got complete silence as a result, until my dad called me today to tell me not to make such a big deal about my ME/CFS because it upsets my mom (who doesn't believe I have anything, despite several doctors saying there's something wrong) and how I shouldn't use my wheelchair at my new job because they'll discriminate against me.

I'm so tired. I'm so scared. I don't have my own place outside of college. But I made it. I survived. I have friends who love me. I'm going to rest this summer. I'm going to learn to pace and I'm going to keep going because god dammit I worked so hard to get where I am and that's not nothing. I grew so much just trying to manage this all, to reshape my self-image. I want to get a PhD. I want to keep doing drag. I want to bake. I want to cuddle with my friends. I want to live. I want to live. I want to live.