u/little_half_pint

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!

**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.

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/

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?!

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)

Hello r/ChronicIllness!

We are thrilled to announce a new ME/CFS community, r/openmecfs! On this subreddit, we promote the freedom to respectfully express all opinions regarding experiences, theories, and recovery. We do not moderate with a heavy hand or adhere to/promote a strict narrative. We welcome open-minded and rigorous discussion. We hope to establish a thriving community, brimming with hope, evidence based research, and inclusivitiy, to include related conditions. Come check us out at r/openmecfs!

Hello! People keep asking about what is so wrong with being prescribed opioids, and I think I have something to say. I am a 33F and currently on hospice due to severe functional decline and symptom burden for severe ME/CFS. Before becoming unable to work 1 year ago, I was a nurse in the Emergency Department.

I am prescribed dilaudid, 4mg every 3 hours. In bad flares, I took that much that often and it controlled my pain adequately. When not in a flare, I never took that much. I would take 4mg once or twice per day on average, some days none, some days more. I never took more than prescribed, never felt a high, never felt a craving, and never absued them. I never took them unless my pain was a 7/10, and even sometimes when it was a 7/10 I didnt take it because I was worried about dependence. It took me a couple of months to work up to that dose, as they started me on morphine. I never thought I would get dependent, because I didnt even take the medication every day! Big LOL.

Then, a few months in I got dependent. I had NO idea what was happening. I was waking up every morning DRENCHED in sweat. My illness is super weird, so I thought it was a weird new symptom because Ive had that happen before when sick.

However, the mornings got worse and worse. One morning, I woke up in complete panic. Thats when it clicked. OMG. My body is going into withdrawl every night! I almost never took opioids in the evening, so my body was going 16+ hours without the med sometimes and I had become dependent.

So then I had to start taking it around the clock. I wanted the minimum effective dose to control my pain without getting withdrawls and that was AWFUL. I went through a "stabilization period" where I wasnt in acute withdrawal, but I felt SO bad. Depressed, irritable, anxious. That took three weeks. My stabilization dose was 4mg every 8 hours.

Then the problem became, your body is used to the stabilization dose. So if you have pain, you need MORE than you originally did AND your body goes into withdrawls as soon as the medication wears off in 3-4 hours. So in order to control your pain, youd need to go up and up on doseage and youre always on a roller coaster of withdrawls unless you take it around the clock, every 3-4 hours. That means messing up your sleep to take it in the middle of the night on an alarm. Also, your body gets used to that dose so if you have breakthrough pain, you need MORE. Then you get dependent on the higher dose, need to stabilize on the higher dose, and if yoi have breakthrough pain, you have to increase the dose. This will happen because your body gets used to the opiates. The cycle perpetuates.

It was too brutal of a cycle. I decided that Im getting off of this medication instead because it was just too much for my body to handle. I was getting pulled this way in that with relief and then brutal withdrawls immediately after 3-4 hours. The relief wasnt even full after awhile, because like I said, you're body gets used to it. The relief just becomes your baseline.

So Im tapering off, and tapering off of opioids is HARD. Every time I taper down by a TINY bit, I get irritable, anxious, and depressed for at least a week, usually 2. Theres a reason people are on suboxone for life. The pain also comes back much worse than before. The time in between doses feels like hell, and you do feel like a druggie because you ARE looking forward to that next dose because you are in so much distress.

I also have to add that even when dependent, I never "craved" the medication. I just went into withdrawls and felt terrible but I always white knuckled it until my next dose when tapering down. If someone didnt have the ability to tolerate a lot of suffering (because pain/withdrawl effects increase by a lot when tapering down or stabilizing), I feel like they would cave and take their dose before the scheduled time and be dependent forever.

Anyways, Im happy to answer questions and I hope that helped. The grass isnt always greener. I must also add that due to the severity of my illness, if there are questions it might take me a long time to answer, but I will do my best!

Edit: I guess I should say my long term plan. My long term plan is to get off of the dilaudid for months so that my tolerance goes back to 0 (this might take 8+ months of tapering and Ive already been tapering for 1.5 months) and then ONLY use it when I feel like Im dying and would go to the ER, so 9/10 pain or 10/10. Once or twice a week max, otherwise I believe dependence could occur. I was taking it when my pain got to 7/10, but it gets to 7/10 every day.

I am currently on dilaidid 4mg in the morning, 1mg in the afternoon, and 4mg at night. (I only take the night dose to evade the withdrawls in the AM, which feels wrong and like a waste, but oh well). I am tapering down 1mg tomorrow, so Im in for it for the next couple of weeks.

Edit 2: I am on hospice and not palliative care because there is no palliative care where I live, so it is hospice or nothing. I do not live in a big city.

Also, I am still a firm believer that people should be prescribed opioids for pain if they need it, and not in a stingy way. This expeience did not change my views on that, I just want people to be aware of the nasty side that many, including me as a nurse who has seen and treated opioid dependence 1000 times, didnt know about. Regardless of this taper, opioids have been life saving for me and I wish everyone who needed them could get them, with awareness. Thats all I am trying to do. Is be pro-opiate while educating people so they can make the best decisions possible for themselves while taking them. And I realize my expeience has not been everyone's experience, and some people are on high doses of opioids without any issues like I had. And that is fantastic for them! I just want people to be as pain free as is possible with our awful diseases.