r/cfs • u/premier-cat-arena • Nov 10 '24
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.
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.
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
-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
a research summary from ME Action
Help applying for Social Security
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 • u/AutoModerator • 1d ago
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 • u/Possible-Customer-80 • 12h ago
A good podcast explaining Dianna Cowern’s journey with ME and the lacking state of science on our illness. As someone who was even more severe than her (I was Profound) and has also recovered quite a bit, I think this exposure is good. I do wish more people had access to her resources for support and recovery.
r/cfs • u/Wake-Robin • 13h ago
A health group I'm in discussed the Olympic athlete who has ME now. They really should contact ME/CFS researchers because they sure have it all figured out!
If it's not covid vax side effects, it's thiamine deficiency or hypothyroidism. Maybe some 'nervous system regulation' is needed or other similar buzzwords. Some of them are sure it's autoimmune (there's no consensus on that in the research but ok).
I got ME a decade before covid and I did not get vaxxed, but go off I guess.
Thought y'all would like to know people who just heard of ME this week already have it solved.
r/cfs • u/lockdownleadmehere • 11h ago
We have an amazing opportunity to make a lot of noise about this. Please if you are able to, email your MP using the template from There For ME. https://docs.google.com/document/d/19gKvzw2dzPRWMWtR-eR9OGCNnaS3xhL8iwqCRdeaWLw/mobilebasic
Let’s do what we can, Beth has used her platform and at the expense of her health. She has wrote a very compelling letter to the PM calling for research funding. The BBC has been covering her story. If you can email, phone or even meet with your MP please do what you are able to. Tag them in any posts about it too.
Do what you are able to and rest up everyone ❤️🩹
r/cfs • u/ShipEconomy2587 • 59m ago
Every single month I have to go through it, I hate having to have periods ontop of this. I feel so sick and fluish each time it happens and it’s exhausting. The pain also doesn’t make anything better
no advice please just venting! I don’t tolerate birth control, implants etc. I already tried
r/cfs • u/Apart_Ambassador254 • 15h ago
So this YouTuber Melanie Murphy said that she has been struggling with long COVID, ME, and POTS (and others, I can't remember). She's now claiming that brain retraining and mindset changes has healed her completely. She's recommending a lot of "red flags" books, influencers and doctors.
She's ranting in her stories today that you should not identify with your diagnosis and that your brain is sending you false signals! Absolutely disgusting.
I believe she was ill. But if all you need was a mindset shift and stop being "afraid of your symptoms", you didn't have ME/CFS. It's very, very dangerous advice.
r/cfs • u/BestCoastElite • 4h ago
I’m 6 months into this. I have a working diagnosis of ME and we’ve been painfully slowly testing, referring, etc. I’ve seen a rheumatologist who seems to be a bone and joint guy, and sleep studies, and GI. I think next would be a neurology referral, which I hoped we’d discuss at my next visit which was going to be next Wednesday.
Today I got a call from my clinic to tell me my appointment is cancelled because “he doesn’t work here anymore”. I live in a small town with no available primary care doctors. I drove an hour each way to see him.
The clinic said “we have a transition doctor who can see you if you have any urgent needs while we find a replacement for your doctor” (of 15 years).
He was the only doctor I’ll ever have who took care of me before and after the onset of this illness. It just hit me that every doctor I see from here on will only know the sick me.
I’m sad.
r/cfs • u/qrackalaka • 2h ago
I’ve had cfs for about 3 years and I’ve been bedbound for the last 8 months.
I managed to get a bit less tired however I get extremely nauseous and my throat closed up, being unable to eat or drink.
Right now I can’t go outside, sit at my desk, shower, brush teeth in bathroom, talk for long periods at a time.
My mum and I tried ginger cookies/beer, peppermint lollies, sea bands, the emeterm watch, and others to try to get me to get down more electrolytes.
However the last 3 days my throat closed up completely and i am desperately trying to sip electrolytes but am dry wretching to vomiting. I’m trying to slowly sip ginger beer (it’s the easiest for me) but my fluid intake has dropped from 2.5L to less than 1L.
I’m trying to lie down and rest whenever I can to prevent PEM and save energy as unfortunately we have to move out to another place as the place next door is knocking down and rebuilding.
I am getting increasingly worried that I will crash further than i already have, so if there is any tips that may help, please do. (sorry if the post meanders a bit, I feel I should give my details I have in my head rn)
r/cfs • u/Aggravating-Bad5714 • 15h ago
My parents refuse to help me shower saying I’m an independent and functioning adult and they don’t exactly believe I have chronic fatigue syndrome. I’m struggling to find energy to shower and it’s so hard. Feeling depressed and wanting to cry.
I don’t have a bath tub and my parents are saying I’m disgusting for ignoring my personal hygiene and demanding me to shower no matter what.
r/cfs • u/thepensiveporcupine • 12h ago
We seem to be in agreement that lack of research funding is the reason why we still don’t have treatments. And yeah, there’s a long history of psychologization and stigma due to medical misogyny. But going forward, I think we have another barrier: the world is going to shit. Between climate change and the rise of ecofascism, issues related to AI, the potential for nuclear war, and the rising cost of living, curing diseases won’t really be a priority. In fact, it might be actively discouraged due to the belief that we’re overpopulated and need more people to die. Also the fact that the general population hasn’t gotten over their covid lockdown trauma and take it out on disabled people, so they’re not necessarily inclined to help.
Not to sound like a doomer but I’m not holding my breath for there to be a treatment in my lifetime. I’m already on a downward spiral so anything after like 5 years will be too late regardless but expecting a treatment in that time is ridiculously optimistic.
r/cfs • u/skitsafrenia • 9h ago
im 19, 20 soon. first became mild when i was 15 from the flu, and became moderate a year ago after getting covid.
i just feel like even if i recover, how do i move on and join the world after such a horrible early adulthood? im a highschool drop out. i dont even know algebra. i see my old friends on social media posting themselves graduating or moving into dorms for college. i never got to do any of that and never will. i feel like a 15 year old in an adult's body and im scared ill feel like this forever even if i get better. its just like ive already hit rock bottom and i dont know how you ever become a normal person after that, even if ur body recovers.
i dont know how someone moves on from this. i dont know how someone becomes an adult when those beginning years consisted of crying in bed surrounded by old trash and fruitflies because theyre too sick to clean or even make themselves food. my peers were graduating and thats what i was doing. how do u become a normal adult after that? how do u even become a normal person at all??
i wish i got to graduate. i wish i was at college right now. i wish i would atleast recover right now so maybe there would be a chance of becoming a normal person after this trauma.
r/cfs • u/Cloudy_Melancholy • 10h ago
I’ve been diagnosed with chronic fatigue syndrome (ME/CFS) on my mom’s birthday. I am 23, turning 24 two days before my mom’s birthday. My black cat and my best friend, is cuddling right by me very close and snug and it feels healing. I’ve been bedbound for over a year now. More like housebound. haven’t showered in weeks had to sometimes get help from a lift up chair. I have to use a cane almost at all times. I barely eat. But I still have to take my meds. I still try to be healthy. That’s why today was very out of place and I got a trigger warning down below just to be safe.
{………}
TW Suicidal ideation:
For a few hours, I’ve been laying on my bed almost feeling like I’m rotting like a zombie. I have no friends, but honestly I do prefer that way. I will admit, though I’ve been feeling very lonely very alone for the last couple of hours. I found myself searching things like assisted suicide, fastest ways to die.
To be honest, it was like I was zoned out. I thought I was at my wits end. I was sinking deeper and deeper into that dark hole. Something was pulling me down. I only had one other attempt on December 2024. Chris Cornell save my life I will stand by that. If it wasn’t for the music playing, I would’ve done it.
[END OF TW]
Oddly, around a while since I zoned out, all of a sudden, I felt something pulling me out of that dark black hole. It felt so bright it felt so comforting, and it wasn’t just my cat. It felt supernatural. It was weird and I am a bit of a skeptic as much as I’m a little spiritual.
But whatever snapped me out of it, it was definitely not in this world. and whatever that was, I want to express my gratitude to it cause I can finally still live. I CAN fight through this hell I can fight through everything that I’m going through it especially my chronic illness and the state of my country right now.
Whatever encourages me to keep living, thank you I’m so blessed for my furbabies, my ma, dad and family. Whoever is reading this at a very dark time: I want you to keep living. I want you to stay strong, be the person you can only be once; they say YOLO for a reason. And even if the outcome is in death, please know that there are people that will miss you and if you don’t know of any person, there will be people like me.
For for all of you, hopefully, please keep on living. We can fight through our own inner turmoils together.
If you ever need anything, I’m not really much on social media. But I’m more than happy to be there if you need me. If you’re a minor and struggling, I am very sorry you have to go do that. You’re way too young to go through something like that. Please know that I am rooting for you. The same will be said for adult and elderly alike.
I’m sending all my positive vibes to you, and virtual hug to those who like those. This isn’t the end, I promise
Yours,
V.
r/cfs • u/TheGreatK • 15h ago
Hello! For those who have never seen my posts, my name is Andrew Kantor and I am a disability lawyer who specializes in fatigue-related disability claims.
On November 10th at 12 pm PST / 3 pm EST, I’m co-hosting an AMA on r/CFS with SSDI attorney Megan DiTolla (u/MFD2026), and Staci Stevens of the Workwell Foundation (u/Staci_Workwell). Thank you in advance to the mods who are allowing us to host another AMA on this sub.
I did a webinar with Staci about the 2-day CPET not too long ago, and you all gave me critical feedback which helped me shape that presentation. Thank you again for all of your help, and the webinar is HERE: https://www.youtube.com/watch?v=sLRjcfJSX58 for anybody who wants to take a look.
We’ll be answering questions about SSDI claims, long-term disability insurance, and the process of getting a fatigue-related disability claim paid – and how to fight back if it isn’t.
If you’ve got questions about your claim, your denial, your documentation, or just how any of this works, please join us. Also, if there’s anything you’d want covered, or anything that would make the AMA more accessible, feel free to let me know ahead of time.
Thank you, and I hope to see you then!
r/cfs • u/SatisfactionWild4145 • 7h ago
I've been dealing with a flare or PEM since August. I am ever so slowly moving out of it.
I've reached a point where Im debating decreasing even more what I have in a week to try to return to baseline.
Right now I have 2 appointments/ week and 2x/week am trying to keep doing my radio show im passionate about. Typically I rest before and after.
These all require me to leave the house and im wondering if stopping some or all for a period of time would help me get more radical rest and not having to keep "recovering" from outings.
Any thoughts or advice?
r/cfs • u/PBandJSomelier • 13h ago
I have post-COVID ME/CFS. I am currently 2 months into a severe crash.
My last crash this long was in winter of 2024; since then I have managed to only have flares ranging from a few days to a week.
This is the longest that I’ve ever crashed. My baseline is sooooo much lower than ever before.
I just got a Mestinon prescription that I am hoping may get me out of this (?)
Medication aside, I could use some inspirational stories of anyone who has managed to get back to their baseline after a crash of this duration! I’m terrified.
r/cfs • u/Raccoon_Ascendant • 5h ago
I’ve been using a Garmin Venu 2 for the last 4 years and the battery is dying and I want to get a new one. Looks like the venu 2 isn’t available still. I’d love to know what version fellow ME sufferers have found most helpful. For reference I am mild and work a desk job and still working on pacing.
r/cfs • u/LuxInTenebrisLove • 13h ago
I've been using this app for about 2 months. I think I must be using it incorrectly, because I don't understand what it is trying to tell me.
What do you get out of this app? How is it helping you?
r/cfs • u/Positive_Skill_6087 • 15m ago
Hallo liebe Community , ich habe Zeit einem Jahr ME CFS bin 29 Jahre alt ihr wisst ja wie schlimm es ist dass man fas nichts tun außer zuhause.Ich habe jetzt eine frage an euch wird me cfs irgendwann man heilen oder wieder verschwinden?
r/cfs • u/Snowflakeavocado • 14h ago
This is prob mostly relevant to uk
( South of England)
Hi I’ve had ME/cfs most of my life but I moved back I with my parents decades ago and they’ve helped a lot.
Now they’re getting too old I need assistance and I have no idea where to start.
I’m on UC with the old DLA .
I’ve done some of the forms the council sent me including the financial one so I know I’ll prob have to use my DLA to pay for some of it even though I don’t have many savings
I currently use the DLA for hydrotherapy
one form they sent is all about paying for a care home which I don’t really want to sign in case they get any ideas about putting me in one.
is there any advice I can get from uk folk about this ie what not to do ? Direct payments or not? Seems exhausting to set up .
Thanks for any advice it’s tiring to research and sorry if this is a bit fragmented I’m typically a bit knackered …
r/cfs • u/lockdownleadmehere • 1d ago
Her letter reads as follows, link to BBC article at the end.
Dear Andy Burnham,
My name is Beth Dobbin and I'm an Olympian who represented Team GB at the Tokyo Olympics. I've gone from training 5 hours a day to being bed bound 22 hours a day, due to developing severe ME (Myalgic Encephalomyelitis) after subsequent Covid and Glandular Fever infections.
You may have seen my recent interview with BBC Sport. It's had over 1 million views on both Instagram and X, triple the amount of anything else posted around the same time. I believe this is a reflection of how many people are suffering with the same illness. There are over 400,000 people with an ME diagnosis in the UK. Charities estimate the actual figure is around 1.35 million due to it taking on average 6 years to receive a diagnosis. ME is almost always a post-viral illness, so the amount of people impacted since Covid has, and will continue to increase.
ME has been neglected and psychologised for years due to 80% of sufferers being women. It has received so little government funding for research over the years compared to other illnesses. As a consequence, there are no approved treatments. There are also currently no provisions within the NHS for severe ME patients (25% of those with ME). What other illness this prevalent would leave patients with nowhere to go within the NHS, or no specialists other than to seek private care?
Lastly, your government has said it wants to bring down the welfare bill. How can it do this without addressing and funding possibly the most obvious reason why people claim. The funding towards research would be significantly lower than the millions spent on PIP, Universal Credit and Carers Allowance over the years for those who can't work due to this illness. As you can see from the graphs below, the people claiming benefits due to ill health has been steadily rising since 2020. ME is often a post viral illness and now with Covid in circulation, this will continue to increase.
ME is so debilitating, severe patients are violently unwell, bedbound and can't even look after themselves, let alone work. To get the welfare bill down, I believe you need to fund research into this spiralling illness and help us all get our lives back.
From a fellow Northerner
Beth Dobbin OLY
BBC Article on her letter https://www.bbc.co.uk/sport/athletics/articles/cmewe4x4vnk5o
Edit to add the email template from There For ME to email your MP about it
https://docs.google.com/document/d/19gKvzw2dzPRWMWtR-eR9OGCNnaS3xhL8iwqCRdeaWLw/edit?usp=sharing
r/cfs • u/Badass-in-the-Arena- • 7h ago
Had a big day, next day felt ok, about 24hrs later I was not ok, slightly better after two weeks of mostly rest but then had to go back to school, and this week has been very stressful, I have not felt as good as my baseline before event, does this sound like prolonged PEM or lowered baseline. my assumption of PEM when it started was quite mild I wasn’t bedbound or anything and I’m just managing school and life but do feel worse.
r/cfs • u/microwavedwood • 19h ago
I went out at the weekend, I had a great time but I unfortunately picked something up there. This is my first time with a "normal sickness" since developing mecfs a few years back. I did not miss normal sicknesses
I can tolerate a certain number of symptoms at once, but when I add extra symptoms on top of my normal ones I can't handle it very well. I'm autistic too and I just feel so overstimulated
I feel very unpleasant. I am not enjoying this
r/cfs • u/marieantoilette • 18h ago
Got too bad. 30 minutes of sleep with Quviviq, then I wake up. Sometimes I manage 3 hours a night? Idk. I then crash from insomnia. Mirtazapin works only for a few days lol. Lorazepam I already have a mild tolerance to and don't want to use it too often. Dentist visit is also almost imminent rip.
I get nauseaous from sleep deprivation, from screen use, I have diarrhea then, it all fucks each other up.
No clue about my baseline, just that I ruined my old one by screen usage. Aggressive rest seems to work until some mini thing causes PEM and without sleep, it all falls apart again.
I am worried I will die. Just crashing 24/7 until my body gives up or I do.
Scared of LDA because of mast cells, scared of Ketofifen because of crashing, same with LDN. I am too severe for any risks.
No clue what to reduce. All dark, no screens or talking, quiet, bed.. less food? I may have to tell my mom not to let my cat in my room anymore and that... that breaks my heart.
I don't see myself surviving without sleep. I may die from screen usage, what a fucking joke. I had so many chances and wake-up calls but kept scrolling. ADHD, OCD and ME are quite the combo. Bonus fun, still with a high libido that I can't do anything about.
My family is starting to donate to the ME/CFS Research Foundation. Me too. Wild I didn't yet. But now I do.
Would I give ten years to be able to go outside again and share intimate moments with others? Yes. Well then, that deal may be real. The fairy just didn't tell me that I would have to persevere through these ten years. I should have read Jonathan Strange & Mr Norrell more carefully. :)
Too bad I have a dentist visit, root canal or extraction in the maybe very near future. But c'est la vie.
I may die. But I am not rushing it. Death comes anyway, so I shall give the chance of life my all. I want to love, to share. I want to write novels and teach people to be slower, calmer, and kinder. I want to find love and intimacy again. But if I die, I die.
Until then, I persevere. I will give love and kindness even if it remains invisible. I love you and I wish you all the fucking best. As long as the music plays, I shall dance.
I choose life. I won't allow capitalist productivity obsessions to suffocate me all too quickly. I live because I want to, but it is also resistance and solidarity. We are not invisible, not to be forgotten.
I can't write very coherently, I shouldn't write at all. I will rest now, for a long time. Floating like an octopus through the dark. Pain is just noise. The river keeps flowing regardless. And so shall I.
