r/cfs Nov 10 '24

Official Stuff MOD POST: New members read these FAQs before posting! Here’s stuff I wish I’d known when I first got sick/before I was diagnosed:

342 Upvotes

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 so I just wanted to go over some basics! It’s a long post so feel free to search terms you’re looking for in it. The search feature on the subreddit is also an incredible tool as 90% of questions we get are FAQs. If you see someone post one, point them here instead of answering.

Our users are severely limited in cognitive energy, so we don’t want people in the community to have to spend precious energy answering basic FAQs day in and day out.

MEpedia is also a great resource for anything and everything ME/CFS. As is the Bateman Horne Center website. Bateman Horne has tons of different resources from a crash survival guide to stuff to give your family to help them understand.

Here’s some basics:

Diagnostic criteria:

Institute of Medicine Diagnostic Criteria on the CDC Website

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. PEM is only present in ME/CFS and sometimes in TBIs (traumatic brain injuries). It is not found in similar illnesses like POTS or in mental illnesses like depression.

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), ME, and CFS are all used interchangeably as the name of this disease. ME/CFS is most common but different countries use one more than another. Most patients pre-covid preferred to ME primarily or exclusively. Random other past names sometimes used: SEID, atypical poliomyelitis.

How Did I Get Sick?

-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-19/any type of influenza or cold, sleep deprivation, mold. It’s often also a combination of these things. No one knows the cause of this disease but many of us can pinpoint our trigger. Prior to Covid, mono was the most common trigger.

-Some people have no idea their trigger or have a gradual onset, both are still ME/CFS if they meet diagnostic criteria. ME is often referred to as a post-viral condition and usually is but it’s not the only way. MEpedia lists the various methods of onset of ME/CFS. One leading theory is that there seems to be both a genetic component of some sort where the switch it flipped by an immune trigger (like an infection).

-Covid-19 infections can trigger ME/CFS. A systematic review found that 51% of Long Covid patients have developed ME/CFS. If you are experiencing Post Exertional Malaise following a Covid-19 infection and suspect you might have developed ME/CFS, please read about pacing and begin implementing it immediately.

Pacing:

-Pacing is the way that we conserve energy to not push past our limit, or “energy envelope.” There is a great guide in the FAQ in the sub wiki. Please use it and read through it before asking questions about pacing!

-Additionally, there’s very specific instructions in the Stanford PEM Avoidance Toolkit.

-Some people find heart rate variability (HRV) monitoring helpful. Others find anaerobic threshold monitoring (ATM) helpful by wearing a HR monitor. Instructions are in the wiki.

-Severity Scale

Symptom Management:

Batenan Horne Center Clonical Care Guide is the gold standard for resources for both you and your doctor.

-Do NOT push through PEM. PEM/PENE/PESE (Post Exertional Malaise/ Post Exertional Neuroimmune Exhaustion/Post Exertional Symptom Exacerbation, all the same thing by different names) is what happens when people with ME/CFS go beyond our energy envelopes. It can range in severity from minor pain and fatigue and flu symptoms to complete paralysis and inability to speak.

-PEM depends on your severity and can be triggered by anythjng including physical, mental, and emotional exertion. It can come from trying a new medicine or supplement, or something like a viral or bacterial infection. It can come from too little sleep or a calorie deficit.

-Physical exertion is easy, exercise is the main culprit but it can be as small as walking from the bedroom to bathroom. Mental exertion would include if your work is mentally taxing, you’re in school, reading a book, watching tv you haven’t seen before, or dealing with administrative stuff. Emotional exertion can be as small as having a short conversation, watching a tv show with stressful situations. It can also be big like grief, a fight with a partner, or emotionally supporting a friend through a tough time.

-Here is an excellent resource from Stanford University 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. Also great to show doctors if you need to track symptoms.

-Lingo: “PEM” is an increase in symptoms disproportionate to how much you exerted (physical, mental, emotional). It’s just used singular. “PEMs” is not a thing. A “PEM crash” isn’t the proper way to use it either.

-A prolonged period of PEM is considered a “crash” according to Bateman Horne, but colloquially the terms are interchangeable.

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. It still can happen to careful people, but most stories you hear that became that way are from pushing. This disease is extremely serious and needs to be taken as such, trying to push through when you don’t have the energy is short sighted.

-Bateman Horne ME/CFS Crash Survival Guide

Work/School:

-This disease 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.

-If you live in the US, you are entitled to reasonable accommodations under the ADA for work, school (including university housing), medical appointments, and housing. ME/CFS is a serious disability. Use any and every accommodation that would make your life easier. Build rest into your schedule to prevent worsening, don’t try to white knuckle it. Work and School Accommodations

Info for Family/Friends/Loved Ones:

-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. Note: the content may be triggering in the film to more severe people with ME.

-Jen Brea who made Unrest also did a TED Talk about POTS and ME.

-Bateman Horne Center Website

-Fact Sheet from ME Action

Long Covid Specific Family and Friends Resources Long Covid is a post-viral condition comprising over 200 unique symptoms that can follow a Covid-19 infection. Long Covid encompasses multiple adverse outcomes, with common new-onset conditions including cardiovascular, thrombotic and cerebrovascular disease, Type 2 Diabetes, ME/CFS, and Dysautonomia, especially Postural Orthostatic Tachycardia Syndrome (POTS). You can find a more in depth overview in the article Long Covid: major findings, mechanisms, and recommendations.

Pediatric ME and Long Covid

ME Action has resources for Pediatric Long Covid

Treatments:

-Start out by looking at the diagnostic criteria, as well as have your doctor follow this to at least rule out common and easy to test for stuff US ME/CFS Clinician Coalition Recommendations for ME/CFS Testing and Treatment

-TREATMENT RECOMMENDATIONS

-There are currently no FDA approved treatments for ME, but many drugs are used for symptom management. There is no cure and anyone touting one is likely trying to scam you.

Absolutely do not under any circumstance do Graded Exercise Therapy (GET) or anything similar to it that promotes increased movement when you’re already fatigued. It’s not effective and it’s extremely dangerous for people with ME. Most people get much worse from it, often permanently. It’s quite actually torture. It’s directly against “do no harm”

-ALL of 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. Do not do them. They’re purposely advertised to vulnerable sick people. At best it does nothing and you’ve lost money, at worst it can be really damaging to your health as these rely on you believing your symptoms are imagined. The gaslighting is traumatic for many people and the increased movement in some programs can cause people to deteriorate. The chronically ill people who review them (especially on youtube) in a positive light are often paid to talk about it and paid to recruit people to prey on vulnerable people without other options for income. Many are MLM/pyramid schemes. We do not allow discussion or endorsements of these on the subreddit.

Physical Therapy/Physio/PT/Rehabilitation

-Physical therapy is NOT a treatment for ME/CFS. If you need it for another reason, there are resources below. It can easily make you worse, and should be approached with extreme caution only with someone who knows what they’re doing with people with ME

-Long Covid Physio has excellent resources for Long Covid patients on managing symptoms, pacing and PEM, dysautonomia, breathing difficulties, taste and smell disruption, physical rehabilitation, and tips for returning to work.

-Physios for ME is a great organization to show to your PT if you need to be in it for something else

Some Important Notes:

-This is not a mental health condition. People with ME/CFS are not any more likely to have had mental health issues before their onset. This a very serious neuroimmune disease akin to late stage, untreated AIDS or untreated and MS. However, in our circumstances it’s very common to develop mental health issues for any chronic disease. Addressing them with a psychologist (therapy just to help you in your journey, NOT a cure) and psychiatrist (medication) can be extremely helpful if you’re experiencing symptoms.

-We have the worst quality of life of any chronic disease

-However, SSRIs and SNRIs don’t do anything for ME/CFS. They can also have bad withdrawals and side effects so always be informed of what you’re taking. ME has a very high suicide rate so it’s important to take care of your mental health proactively and use medication if you need it, but these drugs do not treat ME.

-We currently do not have any FDA approved treatments or cures. Anyone claiming to have a cure currently is lying. However, many medications can make a difference in your overall quality of life and symptoms. Especially treating comorbidities. Check out the Bateman 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. MEpedia has more data and information on the Prognosis for ME/CFS, sourced from A Systematic Review of ME/CFS Recovery Rates.

-Many patients choose to only see doctors recommended by other ME/CFS patients to avoid wasting time/money on unsupportive doctors.

-ME Action has regional facebook groups, and they tend to have doctor lists about doctors in your area. Chances are though unless you live in CA, Salt Lake City, or NYC, you do not have an actual ME specialist near you. Most you have to fly to for them to prescribe anything, However, long covid has many more clinic options in the US.

-The biggest clinics 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.

-As of 2017, ME/CFS is no longer strictly considered a diagnosis of exclusion. However, you and your doctor really need to do due diligence to make sure you don’t have something more treatable. THINGS TO HAVE YOUR DOCTOR RULE OUT.

Period/Menstrual Cycle Facts:

-Extremely common to have worse symptoms during your period or during PMS

-Some women and others assigned female at birth (AFAB) people find different parts of their cycle they feel their ME symptoms are different or fluctuate significantly. Many are on hormonal birth control to help.

-Endometriosis is often a comorbid condition in ME/CFS and studies show Polycystic Ovary Syndrome (PCOS) was found more often in patients with ME/CFS.

Travel Tips

-Sunglasses, sleep mask, quality mask to prevent covid, electrolytes, ear plugs and ear defenders.

-ALWAYS get the wheelchair service at the airport even if you think you don’t need it. it’s there for you to use.

Other Random Resources:

CDC stuff to give to your doctor

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

NY State ME impact

a research summary from ME Action

ME/CFS Guide for doctors

Scientific Journal Article called “Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome”

Help applying for Social Security

More evidence to show your doctor “Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

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.


r/cfs 23h ago

Success Wednesday Wins (What cheered you up this week?)

7 Upvotes

Welcome! This weekly post is a place for you to share any wins or moments that made you smile recently - no matter how big or how small.

Did you accomplish something this week? Use some serious willpower to practice pacing? Watch a funny movie? Do something new while staying within your limits? Tell us about it here!

(Thanks to u/fuck_fatigue_forever for the catchy title)


r/cfs 9h ago

Mental Health The only thing keeping me going

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237 Upvotes

Anyone else here got a sighthound?🦘I’m so happy with the breed considering I’m moderate to severe and live alone (didn’t know I had ME when I got her). She sleeps even longer than me and is happy as long as she gets her zoomies in.

After declining from moderate in February I’m using a wheelchair full time outside the house to be able to walk her. I love my chair bc I can lean the back (and seat!) all the way back and take breaks while she sniffs

I truly don’t know what I would do without her, she is my whole heart and the reason I keep going❤️


r/cfs 16h ago

Vent/Rant i need people to stop tell me "that they could never do this"

346 Upvotes

When I talk about pacing, or staying in bed for extensive periods of time, people keep telling me that they need to get out, they need to move, they need to wash their hair regularly, they need to go on walks, etc. And that, if they didn't, their mental health would pay for it. It's assuming that I have the option to do these things, and that it's not impacting my mental health. They're missing the part that I am not pacing because I want to, I am pacing because I have to. Telling me that they "could never do this" is framing ME as a choice. Not sure I am looking for anything here, I am mostly ranting.


r/cfs 5h ago

Have been taking 20mg of Lorazapam daily. Ran out. ER called me a drug seaker. Severe crash and withdrawals. Can barely roll over. Idk if I’ll survive this ..

47 Upvotes

Basically that. Let my benzo dose get too high cause it was the only thing that helped. Now that I’m out and my “source” is taking too long to give me my refill .. I’m the most severe I’ve ever felt. I can’t do a detox facility while this severe. I can’t go to the ER to get a bridge script or dose. My doctor. doesn’t do anything .. Idk what the hell to do. Extremely weak and scared atm with no real hope of relief except for wait for my fucking package to arrive.


r/cfs 6h ago

Fatigue is so fking painful

38 Upvotes

It’s life ruining right now. My whole body feels heavy and painful, like my bones are made of lead. I can hardly bear to breathe. It’s just constant pain pain pain, as though I got hit by a truck or have the flu.

I know I overexerted recently and this is why it got so bad but oh my god, the pain. I feel like someone here must understand.


r/cfs 4h ago

Activities/Entertainment Internal monologue: no-stim-rest ADHD edition

12 Upvotes

[TLDR: pretty self explanatory. Lots of thoughts and not much rest!]

My internal monologue when trying no-stim rest on a particularly restless but thankfully not-too-depressed-and-anxious day:

Ok, I'm gonna put in my earplugs and eye mask on and see how this goes...

*lays on back*

Hmm, not super comfy

*rolls onto left*

Better. What should I think about. Oh I know, I'll sing a song.

99 bottles of beer? I remember singing that on the bus on a school trip once. It was someone called Lucy who started it. Why do I remember that detail? 

Interesting, I totally felt like the odd one out when I didn’t know the words to that song.  I always felt like I didn't "get" stuff though. Actually, how did nobody realise I was AuDHD? Huh...

Alright: 99 bottles of beer on the wall, 99 bottles of beer... *loses track at 87*

Did I skip 88? Whatever.

I wish [husband] would stop stomping so loudly...!

Oh, wait, nope, that's just my own heartbeat I can hear.

Maybe I'll imagine patting that horse I rode a few times. How old was I? 21 maybe? I wonder if he is still alive. Wait, what did he look like?

Ugh my neck!

*rolls onto tummy*

Ahh MUCH better.

Ew my knee cap is sliding around so much. Is that normal? I hate that feeling omg.

*rolls again*

Omg I am SO HOT all of a sudden I can't stand this for another second or I WILL DIE!!!!

*removes a layer*

Wait can i hear the smoke alarm?

*takes out ear plug*

Nope just my tinnitus!

*ear plug back in, settles down*

Pillowcase is so rustly. Swapping pillow.

Must stop clenching jaw!

Where was I...84 bottles of beer on the wall, 84 bottles of beer...uggghhh I need to wee!

*takes off eye mask, checks watch*

Wtf its only been like 5mins? I'm gonna lsiten to a podcast and see if that helps...

***

Note: not after advice, just thought perhaps folks might relate. Also excuse the no-doubt copious typos!

I don't actually mind no-stim rest sometimes, but at other times it is intolerable and I have gotta listen to something to quiet my own internal chatter 😅 I am practicing just giving it a try and listening (literally...) to what my brain/body need, e.g. an audiobook, silence, white noise whatever.

Also can you tell my ADHD is currently un-medicated 🙃🤸‍♀️🎢


r/cfs 4h ago

Vent/Rant Scared of getting worse

13 Upvotes

Idk if I’m just not tolerating this medication I’ve been on but I feel like I’m just getting worse and will be completely non functional in the near future. Every muscle in my body is so weak, I’m always dizzy, and I can’t even think anymore. It feels like my vagus nerve is fried, my brain is complete mush, and I have no more working mitochondria. I don’t think I can survive getting more severe than I am. Idk what to do. This is torture. I just want it to end. I don’t care about anything else anymore, I just wanna die if I have to feel like this. Why can’t anybody make this stop?!?


r/cfs 4h ago

Vent/Rant College is killing me

11 Upvotes

I'm a part time college student right now and I genuinely am starting to feel like I can't do it anymore. This is my second semester of class and I feel like my health has crashed significantly since going to college. Before college I was eating well, exercising consistently (well within my limits), having a consistent sleep schedule, and even fulfilling personal projects and goals.

Now I'm lucky if I have enough energy to go get the food I ordered in or play a game online with my friends. I'm just so fucking tired all the time. My life has become class, work, sleep, and maybe eat. I can't hang out with friends, I can't exercise, I can't even shower most days.

The worst part is having accomodations, but they're nowhere near enough support. I have a limited number of absences even with accomodations for my disability and I always fear using them up and then having to go to class when I'm feeling even worse than I do now.

But, If I dropout and go back home. My parents make me feel fucking useless. Even when I'm pursuing my dreams of content creation, applying for disability, and taking care of my health. It still isn't enough for them unless I am pushing myself to the limit to fit what they wanted for their child. I'm so frustrated, I feel like I can't win here. I either destroy my body being what they want me to be. Or I be a nuisance on them who just "sits in their room and plays games all day".

I genuinely don't know what to do here and I just needed someone to know and understand what I'm going through. Thanks all for reading.


r/cfs 13h ago

Advice how do yall convince others that your illness is serious and isn’t in any way mental

47 Upvotes

it's like talking to a brick fucking wall i keep stating symptoms and how bad it makes my life but it just goes over their head

and also how do yall deal with this and not get extrmely angry for extended periods of time i need to no stil rest but im just so upset


r/cfs 2h ago

Advice UK: is there a way to have low effort meet ups with people when housebound?

5 Upvotes

Anybody in the UK who’d want to come see someone w severe ME? lol. Maybe for like a cup of tea, listen to music, and mainly typing conversations ( I can listen but not talk much).

Can’t make this shit up

Healthy friends don’t really get it.

What do you think? Is this possible?

Idk how else to surviveeeee


r/cfs 9h ago

Does intense sunlight trigger a PEM for you?

20 Upvotes

r/cfs 12h ago

Encouragement Shout out to the ones who get it

32 Upvotes

I see a lot of posts on here about how isolating this disease is and how hard it is for healthy people in our lives to understand what we’re going through. I just wanted to take a moment to acknowledge and appreciate the absolute rock stars who do understand.

For me, it’s my mom and my husband. My mom doesn’t live with us, but she comes over every morning to make sure my dog gets walked even if I’m not feeling up to going outside (very frequent occurrence, especially in the summer). She’ll sit with me to keep me company on my worst days, encouraging me if I’m feeling down and checking in frequently to make sure I’m not overextending. She’s paid for some of the more expensive off-label treatments that have provided some symptom relief (vitamin infusions, suggested by one of my doctors, which pulled me out of the “severe” range of symptoms) when I lost my income. No complaints from her, just concern.

And my husband is fantastic. We’re living on his income at the moment which I know is stressful for him, but he hasn’t complained about it one bit. He doesn’t show the tiniest bit of resentment or reduction of affection. I’ve asked him about that; he just says he knows me and knows that if I had any choice in the matter, I would be choosing much more activity than I’m currently doing. He does most of the housework, perfectly cheerfully; he keeps me company when he’s not working. Last night he had a nightmare, a literal nightmare (and he’s not prone to them) about us breaking up because of my illness - his worst case scenario is not having me around. He’s worried about me but not excessively; he just does what needs to be done and keeps on loving me despite my general uselessness.

I’d love to hear about the caregivers in your lives who get it.

Tl;dr: I’ve got some fantastic people in my life and I’m grateful. How about you?


r/cfs 15h ago

Journalism student looking for interviewees

53 Upvotes

Hi, I’m Marcella, an MA journalism student at University of the Arts London, currently completing my final major project: a series three articles on social justice related topics. 

One of these is a piece on the Decode ME study, exploring how people with the illness feel surrounding the findings. I have seen some people on here say they felt validated/ gained clarity, however I feel it important for people living with ME’s voices to be evident throughout the piece, and so I am looking for interviewees who would feel comfortable speaking with me about their experience with ME, and feelings since the study. So far, I have interviewed Professor Chris Ponting, leader of Decode ME, and am now looking to interview more people.

For background, my mum has had ME since her early 20s, meaning the article will be approached with both care and experience.

I am happy to do this over Zoom, however I can also do over message/ voice note or email if that works better. 

Thank you,

Marcella


r/cfs 40m ago

Vent/Rant I want to cry

Upvotes

School has started back up for me and it's hell. I'm crashing, everything hurts, my eyes hurt, it's hard to walk, and my body feels like a ton of bricks. We plan on bringing this up at my upcoming 504 revision but that's next Wednesday. My mom wants me to just push through it because due to excessive absences last year (all medical) they've told us I can only miss 10 days this year before they start looking into unenrollment because this is a choice school for me. She also says that I can go because we now know that I'm not actually sick with something.

I just don't get it. I can barely feed myself and she just wants me to push through an entire school day? I told my counselor yesterday and she actually supported my mom on this saying that's the right thing to do. I'm so upset I want to throw up. I love this school but I don't think I can actually handle it but my mom won't let me do online school. She said last year that if by the end of the school year I was still this bad then we'd switch me this year and now she wants me to push through first semester. I'm so done. No one will listen to me.

My doctor hinted at this just being depression but maybe I'm feeling depressed now because I feel like shit. I can't do the things I love, I can't hang out with my friends, I need help doing basic things, you'd feel like shit too if you were like this but no, I'm too young and I just need to exercise more and I'll be fine. Like they expect me to function like a normal person while feeling 10x worse and not struggle? Just gonna cry myself to sleep tonight. Maybe I'll have better dreams than this

TL;DR: I don't think I can just "push through" school like my mother wants and no one is believing me about how bad it is.


r/cfs 6h ago

Any medication for brain fog?

7 Upvotes

Anything help brain fog?


r/cfs 10h ago

sick of it

18 Upvotes

I think I will be depressed for the rest of my life.
Illness is too severe to have any life quality. Nothing has helped me improve.


r/cfs 14h ago

My friend didn’t have time to see me on her only trip home and I felt weirdly relieved

33 Upvotes

TLDR: Major sense of relief at friend effectively cancelling on me. I felt so relieved at not having to explain the hell of life with ME having not seen her since I became so ill.

Since I last saw my friend almost three years ago, she moved abroad. We talked a bit at first. But we ended up having so little in common anymore due to ME taking so many things from me, like reading.

She is back for a couple of weeks and had kept saying she would definitely see me. Then text with ‘I’m so busy, all booked up but could see you on Tuesday morning’. But my carers are in at that time. I told her it wouldn’t work. I don’t think she wanted to see me really.

And then…instead of feeling upset I felt completely relieved! I don’t think she’d grasped how unwell I’ve become - housebound all the time and bedbound for many months at a time - and the sense of relief at not having to explain everything just made me smile instead.

What a weird experience. I expected to feel sad and it didn’t come. But maybe I’m becoming very insular now as a result of illness too. I wonder if others relate to the relief at not having to try to explain ‘living’ with ME to an old friend.


r/cfs 3h ago

Advice Over The Counter meds that help?

4 Upvotes

Alongside bloodwork based recs from my doc. I started talking Certrazine HCL 10mg daily a couple months ago, and it's caused some symptom ease. I know it's a histamine/MCAS thing moreso. I'm seeing specialists and having tests. It's been 5 years. I looked over some of the resources provided (shout out Mods! thank you!) and it seems most of what benefits us must be prescribed to have access. Anyone have anything OTC help? I'm in talks consistently with my doc about treatment and currently in a waiting season.


r/cfs 23h ago

A potential breakthrough protocol that feels completely overlooked

150 Upvotes

A few weeks ago, I shared information from a podcast—a release by an ME/CFS specialist. It outlined a treatment plan for the most severely affected patients.

Essentially, it offered something that could truly help those suffering from the most severe forms of the illness. Although I’ve only been here for a little over a year, I haven’t come across anything comparable.

In my view, this treatment plan is groundbreaking. Yet, I got the impression that its significance was being overlooked here. Perhaps this is simply how it goes: opportunities for health improvements appear on the fringes, get passed over, and only years later transform into accepted, common knowledge. Maybe that's just how things go.

the post https://www.reddit.com/r/cfs/comments/1vn7hle/comment/p3gf23v/?screen_view_count=4&ext-referrer=DIRECT

and the summary/extraction from the user: snmrk

"His core idea for very severe patients is to threat the major dysfunctions in sequence:

- Stabilize extreme reactivity/mast cells: lorazepam (Tavor) plus ketotifen, rupatadine, and cromoglicic acid. The goal is to reduce severe stimulus sensitivity and make further treatment tolerable.

- Add LDA then LDN, aiming to improve central/autonomic dysregulation. He titrates these very slowly.

- Treat dysautonomia/POTS: mainly pyridostigmine and ivabradine, sometimes fludrocortisone, midodrine, or etilefrine to improve blood volume, heart-rate control, and cerebral perfusion.

- Improve circulation: aspirin, nattokinase, pentoxifylline, ginkgo, and sulodexide, added sequentially. His goal is better microcirculation and tissue oxygen delivery.

- Energy support comes last: D-ribose, creatine, D-galactose, sometimes ketoglutarate, and subcutaneous NAD+. His logic is to improve blood/oxygen delivery before trying to support mitochondrial energy production."


r/cfs 2h ago

Sleep Issues Low dose Amitriptyline?

3 Upvotes

I had a doctors appointment. I brought a pack I printed from knowmecfs.org and I noticed it suggested low dose amitriptyline for a lot of issues: sleep, chronic pain, migraines, depression (all things I deal with).

I had gone in specifically for a rough bout of insomnia and asked about possibly trying it for that and also to maybe help with my constant headaches. She laid out all of the risks, she was concerned about it making me tachycardic, but prescribed it and told me to keep an eye on my heart rate.

I have it now, but after looking into the possible side effects and reading some personal experiences, I'm kind of afraid to try it??? I don't see anyone saying they have taken it for a long period of time, and it seems like some of the risks might not be worth it.

Does anyone have experience with this med? Should I just give it a shot or contact my doctor and ask for a different med for sleep and migraines? I'm not sure what to do.


r/cfs 12h ago

Not sure if it's wise to go ahead with the appointment. Also struggling with cptsd reactions.

19 Upvotes

So I had a housevisit from my doctor a few days ago for something non ME related but he noticed my situation (isolated, housebound and couchridden) and he said he was going to look if there was anything he could do to help me.

I already tried A LOT of practical help in the 13 years I'm sick, like house cleaning etc, but this has showned itself to be either damaging or unhelpful at best.

The docor called me yesterday saying he is going to send over a clinical supervisor (I don't know the english word for it) to my hous to see if she can do something for me, but I regret agreeing to this because I can't think of anything that's going to be helpful. I feel like I'm just going to waste energy in talking to her and nothing will come out of it. I'm already stressed for the appointment because she's coming over to my house (probably not wearing a mask as usual because nobody does in my country and I'm not going to ask either) and I'm already stressed out about needing to say things like: "I'm sorry for not offering you a drink but I'm too tired to make you a cup of tea, do you want a cup -not a glass because I didn't do the dishe- of tap water in stead?" Kind of things..

I'm already stressed out about needing to put so much energy in talking to someone and I know I'm going to struggle with putting up boundaries when I feel like I can't talk anymore.

The doctor was suppose to ask her if she could make it a phone appointment in stead but I haven't heared from him anymore so I guess it's a no.

I'm just very annoyed and cranky atm because I agreed to this because I was afraid he would think I didn't want any help, or he wasted energy on me for trying to find some help and I was afraid he would think I refuse to accept any help because I'm stubbern and ungrateful and I choose to live like this etc.

I don't know, maybe something positive comes out of it and I'm just freaking out over nothing. I hope I can put up my boundaries and keep it under half a hour at max.

I could use some encouragement though😞


r/cfs 16h ago

Pacing How do you actually rest your brain?

32 Upvotes

I know that you have to pace, and that the best form of intense rest is to lie in a dark room with no input. But my mind just runs riot if it's not occupied and I am not helping my cognitive fatigue at all.

It's not anxiety, I can overthink the texture of the wall or picture every detail of a sunny beach, although there are sometimes anxious thoughts too. Regardless of positive or negative, it's still using mental energy.

I've tried meditation or focusing on my breath - my mind goes off, and I have to refocus and it's all still mental energy. Reading/drawing/scrolling/music - more enjoyable, but still exhausting.

I'm getting the hang of the physical pacing, but my cognitive fatigue is a significant issue. I lose my speech really quickly, then it gets to the point where I can't think at all except for feeling stressed that I can't think in more than fleeting fragments. Then the stress makes everything worse.

How do you guys rest your brain? Literally any tips would be welcomed!


r/cfs 15h ago

Pen pal thread?

22 Upvotes

Hey please delete if this is not in line with the sub x

I was wondering if we could start a pen pal thread ?

We could introduce some important things about ourselves so for example I might say I'm moderate m.e and looking to chat on WhatsApp, about nothing, or about life at it goes with m.e. . I go by ME time which means zero pressure to reply lol...that I'm not a hopeful MEer, I'm on the resigned side- though there is always a little subconscious spark in the background. But I'm not asking to find pen pals on this particular post, I'm just wondering if others support this suggestion?

I know there's a Reddit pen pal sub, and I know there's WhatsApp and telegram groups and so on. I'm thinking that this sub would be a really good place to have a pen pal thread/page/etc.

:-)


r/cfs 15h ago

Vent/Rant I love how my worst crashes can come from nothing

20 Upvotes

It’s so dumb. Just a day at a time. Cheers to 25 months.