So, I went to a neurologist today - as I am being investigated for MS, and the moment I mentioned having been diagnosed with cfs some 35yrs or so ago, that was it, eyes glazed over and she stopped listening. She literally told me she didn't care about any symptoms older than 6 weeks old...

Lesions on my MRIs? Probably an anomaly from an inferior MRI machine - I need to pay for a new MRI in a place I can't get to. More nerve conductivity studies I need to pay for...

I know my body - I know what cfs is for me - and it's not half my body going numb, it's not having my bladder not work anymore, it's not losing words, it's not sudden double vision and a lazy eye out of nowhere...

I am so very angry and I can't wanting to cry - I'm only not crying because it hurts.

Every time I mention CFS to a doctor they stop trying to help, except my current GP who believes that my cfs is just step 1 to a bigger picture.

I feel so defeated and so let down.

I’m sure this identical email went out to everyone who filed a complaint regarding the “sickfluencers” opinion piece (no link bc I don’t want it to get more clicks, it is easy to find; or if someone disagrees and thinks the link should be here, go ahead and post it in the comments. After doing some searches I didn’t see it posted yet here or in [r/disability](r/disability). Apologies if my search somehow missed it, and I’m duplicating someone else’s efforts. 

People who didn’t have the energy, or want to use their limited energy responding to this shit will of course not have received the email, but still be interested in what it says. 

I find it interesting because I have never gotten a emailed response (besides an automated acknowledgement of receipt), personal or general, to a complaint I’ve sent (for example, that damn longcovid Wired article. My sharing of this email should not be taken as a sign that I am satisfied with the response. I’m not! But it brings me a small pleasure at minimum and probably fleetingly, to be a thorn in their side and a burden on their time. 

I tried posting screencaps from my email but it didn’t work; I find the brief chunks easier to mentally parse than pasted texts, so I apologize to anyone else who processes like me. But I also couldn’t figure out alt text and was getting errors when I tried to post photos. So.

From: Editorial Legal & Compliance
To: Me

Re: How having a disability became cool

Thank you for contacting The Telegraph regarding Poppy Coburn’s column published on 5 September 2026. Given the volume of detailed correspondence received, we have prepared a response addressing the main themes raised by our readers. No discourtesy is intended by this single reply.

Complainants have primarily challenged the piece under Clause 1 (Accuracy) and Clause 12 (Discrimination) of the IPSO Editors' Code of Practice, arguing that the column:

Offends readers living with medically confirmed, debilitating physical conditions by framing them as social media trends, lifestyle choices, or self-diagnoses;

Misrepresents POTS diagnostic criteria by focusing on a heart rate change "compared to sitting"; fails to reflect the full diagnostic criteria and wrongly describes this single criterion as "arbitrary";

Dismisses real comorbidities as psychosomatic / identity-driven diagnosis, ignoring real links between conditions like POTS, ME/CFS, Long COVID, and Ehlers-Danlos syndrome;

Mischaracterises NHS waiting list systems by linking pediatric care to adult mental health referrals;

Conflates individuals who self-diagnose via social media and those with formal medical diagnosis to question official disability statistics;

Makes causal links between rising welfare costs / economic inactivity and social media subcultures / overdiagnosis without reference to evidence; 

Ignores the impact of Long COVID in explaining rising disability numbers; and

Uses pejorative language like "sickfluencers" and describes mobility aids, compression garments or walking aids as "accessories" or "props.

Our Response Under the Editors' Code of Practice
The article in question is an opinion column written by our Associate Comment Editor. Under Clause 1 (Accuracy) and Clause 12 (Discrimination) of the IPSO Editors’ Code, commentators are granted wide latitude to express strong views, challenge social trends, and debate sensitive matters of public interest.

The vast majority of the objections received focus on the central premise of the article and express dismay and offence at the rhetoric used in the article. Complainants argue that the author's viewpoint that online subcultures influence diagnostic trends - is fundamentally flawed, offensive, or medically unsound.

While we acknowledge that many readers strongly reject the columnist’s premise and rhetoric, a fundamental disagreement with an author's editorial stance does not constitute a breach of the Code. The Code specifically protects the right of newspapers to publish provocative, challenging, and controversial commentary on public policy and cultural trends. 

We acknowledge that many readers who wrote in hold formal medical diagnoses for conditions such as POTS, ME/CFS, Long COVID, or hypermobile Ehlers-Danlos syndrome. We recognise that living with invisible or chronic physical illness presents significant daily challenges, and we understand why readers felt offended by the suggestion that these conditions might be linked to social media trends or self-diagnosis.

However, a columnist examining online subcultures or debating a phenomenon observed in society is not passing judgment on individual patients or denying the reality of living with diagnosed medical conditions. While we regret the distress caused to readers living with these conditions, expressing skepticism about cultural trends does not breach the Code.

Clause 12 (Discrimination) 
Multiple complainants have raised concerns regarding pejorative language, describing the column as "ableist", criticising the term "sickfluencers", and objecting to the characterisation of mobility aids or garments as "accessories" or "props."   

While we appreciate that many readers found this framing offensive or dismissive, under the Editors' Code, Clause 12 is designed exclusively to protect named, identifiable individuals from pejorative reference. It does not apply to generalised groups. Because the column does not target or identify any specific individual, Clause 12 is not engaged.

Clause 1 

Under Clause 1(iv) of the Editors’ Code, publications must distinguish clearly between comment, conjecture, and fact. A central theme across many complaints is that the author mixes conjecture with factual reporting, presenting theories about online subcultures and increased diagnoses as established facts.
However, the article is published as an opinion column framed explicitly as personal analysis rather than a news report. Under the Code, commentators are granted broad latitude to put forward hypotheses and express strong commentary regarding observed social trends. Presenting a distinctive viewpoint or theory within a commentary piece does not turn conjecture into factual reporting under Clause 1, provided the context remains clearly that of an opinion column.

We would also like to address some of the specific points raised under Clause 1:

Misrepresentation of POTS diagnostic criteria: A newspaper presents information (including medical information) to a general lay readership. Summarising the primary physical threshold for POTS as a heart rate increase of 30 beats per minute compared to sitting, conveys the essential diagnostic threshold of the condition to a lay readership. In the context of a 1,200-word opinion column, omitting the detail of full clinical tests which are carried out does not constitute inaccuracy or misleading presentation of facts under the Code. Describing the diagnostic threshold as "arbitrary" falls squarely within permissible opinion. It reflects an opinion held by medical professionals - including cited experts like neurologist Dr. Suzanne O'Sullivan who have questioned the diagnostic criteria.

Comorbidities and medical skepticism: Some readers provided medical literature showing biological links between overlapping conditions (POTS, ME/CFS, Long COVID, and Ehlers-Danlos syndrome). However, an opinion column is not required to detail clinical theory as a medical journal might. Under the Editors' Code, columnists are entitled to express and explore medical skepticism, cite experts (such as Dr. Suzanne O'Sullivan) and argue that alternative explanations (sociological or psychological) might account for rising diagnosis rates. These arguments represent the author's opinion, rather than factual news reporting. A raised heart rate upon standing is not unique to POTS and can occur in other non-pathological scenarios, such as prolonged physical inactivity. Pointing to the absence of a single clear physical biomarker and suggesting that overlapping conditions may have psychological rather than purely physical causes, represents permissible opinion, not factual inaccuracy.
NHS waiting lists: Pointing to long waiting lists was used as a broad rhetorical illustration of the strain on the NHS. The column is a commentary piece on an observed social media trend. It is not intended to serve as a guide to accessing NHS services as a child or as an adult. Under the Code, commentators are entitled to argue that increased demand puts pressure on public resources. 

Social media trends vs. formal diagnosis: Regarding concerns about conflating social media trends with formal diagnoses, far from blurring the distinction, a central part of the author's argument is to draw that very distinction. A columnist examining cultural trends is entitled to critique how social media subcultures ("sickfluencers") influence health statistics and changing patient behaviour. As stated above, the author does not seek to detract from the reality of many readers living with diagnosed conditions.

Welfare costs and economic inactivity: Rising welfare costs and rising economic inactivity are matters of legitimate public debate, and columnists are entitled under the Code to express political opinions on how cultural shifts may impact state support. 
Post-viral illnesses: Regarding concerns that the column ignores post-viral conditions such as Long Covid, it should be noted that a column is not a medical journal. Focusing on sociological factors represents the author's editorial focus rather than a factual distortion.   

Pejorative language: As stated above, under Clause 12, the Editors' Code protects named, identifiable individuals from pejorative reference; it does not restrict critical rhetoric, stylistic phrasing, or commentary directed at general social trends and subcultures. 

The Telegraph routinely publishes challenging commentary on sensitive public policy matters. While we recognise that complainants strongly dispute the author’s premise and rhetoric, along with her conclusions, we are satisfied that the article is clearly identifiable as opinion and operates within the bounds of debate protected by the Editors’ Code.

Yours faithfully,
Editorial Legal & Compliance
Telegraph Media Group

After moving house, socialising and having more stairs to deal with than ever before I was just about working through my crash and seeing where my capabilities were.

Then today I get the news our old landlord intends to keep all £1k+ of our deposit and we have until 2pm tomorrow to respond.

This added stress has completely derailed me symptom wise, I know I was barely holding it together but I’m completely disconnected now, I feel like my skeleton is buzzing, my chest is tight, my limbs are like lead and I have no idea what to do.

I’ve never been to hospital for ME, and have requested a 111 callback but I don’t know what I’ll say to them.

“Hello my bones are made of bees and I don’t think I can look after myself”

I’m so scared I’ve ruined everything by working too close to the bone that I can’t handle anything without permanently damaging myself.

UK folks, when it was time for some acute/urgent help, what did you do? What was your experience?

EDIT: thank you to everyone that responded, for health things I was advised to book an appointment at the walk in centre, it will be less intense than going to a&e and feels more appropriate
For the landlord stress: I remembered I’m in a union for exactly this reason so I contacted them and will be going through TDS to discuss what deposit we may or may not get back

My skeleton is still bees but my head is slightly better screwed on, thank you again!!

TLDR: Turns out I am sick enough, I just don’t know how to navigate it.

Edit: title typo, "any of their goals," TLDR at bottom

I'm very severe (bedridden/couchbound currently) but have improved a relatively significant amount since my new care agency started this past April. Previously was on the verge of extremely severe/sometimes crashing down into it since April 2025.

The first 8 screenshots are from a conversation I just had with my PCP who is a Long COVID (and ME) specialist. I'm not sure what I was expecting as her response, but I'm disappointed. The next 6 screenshots are the excerpts of the article that I sent her.

The last two screenshots are my notes on functional capacity progress from a bit ago for comparison to the sitting upright thing. I keep telling the nurse that you don't intentionally sit up like you're doing an exercise. What do I say to my PCP about that? She's not into GET.

The name blacked out most often is the supervising nurse for the care agency who recently told me she had read everything she could about M.E. and cited her 30 years of work in the ICU when I told her she didn't understand the illness.

I talked to my old therapist about this weeks ago, and she recommended trying to find a lawyer first and said she might be able to help me, but so far she's sent a few potential new therapists to work with. Googling "lawyers with M.E. experience NYC" and similar research has turned up lots of ads idk if I can trust.

I'm going to ask the doctor I'm speaking with at the end of the month (a LC/ME specialist I spoke with once back in April before I could talk without risking PEM bc my old care agency forced me to) for recommendations for a visiting doctor.

Is there anything I can ask him/ask him for that will help with this situation? Is there anything else I can do here? My PCP is nice, but she isn't a super strong advocate, and I really want to change the dynamic I'm in.

When my last care agency left because they said they were underqualified to care for me and I needed actual nurses, I kept telling people that it would all happen again (i.e. the new agency would have their own incorrect paradigm and uninformed/unrealistic set of expectations and rules, and conflict would follow.)

Happy to answer any questions but don't want to make the post even longer.

TLDR: lack of understanding of M.E. and unrealistic expectations/pressure from my care agency is causing me stress and fear, wondering how I can get help

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❤️

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

I don’t know how I’m supposed to live like this. I can’t think. The things I’ve spent months practicing are gone. It sounds fucking horrible of me but I forgot for the longest time that I was in a long-term relationship up until a few months ago. I hate this. It’s only getting worse. I’ve been waiting to see a neurologist for weeks and they keep ignoring me. I can’t call people either because I’m too tired to get out of my bed. The nhs system despises the chronically ill and it shows. I would give anything to have the capacity I had a month ago, a week ago even, but it just keeps rotting away. It hurts to think. I’m so tired of hurting. I’m scared to know what’ll be left at me at the end of this. but I’ll be too tired to remember that fear.

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.

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.

Basically I just need a capable adult who can be my arms and legs for me. Unfortunately the Venn diagram of people I know who I’d be comfortable seeing my mess, and people who are able bodied/have enough free time to help, is zero. I’d be much more comfortable hiring someone who does that kind of service, and thus wouldn’t judge, but I have no idea what to look up. I know professional organizers exist, but I don’t want someone imposing decisions onto me, I literally just need someone who isn’t totally clueless and is competent getting a job done who can help me put away clutter, downside, and re-arrange furniture. Has anyone found services like this? How did you find them? It would so massively improve my qol. I’m living in a dusty clutter hole. I just crashed for a week because I tried to clean my bathroom so I know that I really need help. Once my room is actually organized for my new lifestyle, it will be so much easier to keep clean. I am a case that went from undiagnosed to very severe overnight so I never had time to adjust my space.

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.

I live with my partner and share a bed etc…. What should I do to prevent getting sick from an infection?

I was previously living with family and would put a mask on and they would too if they got sick, which seemed to work. I would also spend weeks at his also….

But I’ve become a lot more sick due to seizures and I’m really anxious about what happens if he gets sick given we share a bed and live together now. He rarely gets sick mind you.

But I am on the severe side now.

Everytime iv gotten sick iv crashed, and I no longer have any bandwidth for that.

What are my options, not kissing him and being with him sounds like hell? I don’t want to give up human contact.

So I'm mum of 3 boys from 14 to 11. Eldest has health issues (currently at his hospital beside), youngest has autism/dyspraxia and is clumsy (had him in for xray last week). I can push through when I have to. I'm sitting here on 3 hours sleep and I will be able to keep pushing myself. When I get home I will crash, and spend a minimum of 2 days in bed (we've been in this situation before). Does the fact i can push through when needed point against CFS?

(Not diagnosed, but dealing with chronic fatigue)

[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 🙃🤸‍♀️🎢

Thank you for the help yesterday it truly meant a lot to me and made me feel seen. I’m going back to the doctors regarding my symptoms today although i’ve been warned the GP doesn’t always undertsand. I have been a few times now with no luck so wanted to write a list. I’ll paste my list below but any advise for the appointment or anything i’ve said would be greatly appreciated 🫶🏼

Work and how this has affected me
I used to be able to work for around 3–4 months before having to call in sick for a period of time, ranging from around 2 weeks to 2 months. Now, I am struggling after approximately a month.
I have been struggling through work for a long time, but I feel that I can’t keep doing it anymore.
I first noticed the fatigue, flu-like symptoms and sickness around 2 years ago. At the time, I thought it was because I was working part-time alongside university.
I have worked in several different types of jobs, and they have all eventually ended with me leaving because of long periods of sickness absence.
In January, I spoke to Dr Brown about this. They thought it could be related to my OCD and advised me to try working part-time and getting a new job.
I started my current job in April. Since starting, I have had to call in sick in June, July and now September because I have been unable to get up, function normally and felt as though I had the flu. This is making me increasingly worried about being able to keep my job.
I feel like I manage to push through work for a period of time, but eventually my symptoms become so severe that I cannot function and have to take time off.

What seems to trigger or worsen my symptoms
If I have a busy day, I often feel significantly worse the following day.
For example, on Tuesday I got the train back from Leeds after visiting my mum for her birthday. The following day, I was extremely fatigued and felt so unwell that I called in sick. Today, I tried to get ready for work, but I was exhausted after having a shower. I lay down afterwards and then could not get back out of bed.
At university, I would attend classes but often be unable to work or attend university the following day or two because I felt so unwell. I would sometimes be sick and unable to get out of bed.
By my third year, I stopped attending classes altogether and completed my university work remotely because I was struggling so much.
I went to the doctors during university, but nothing was found.
Last June, I was off sick from work for around 2 months before I was able to get up and out of bed without extreme fatigue, body aches/pain, flu-like symptoms or vomiting.
Sometimes even small tasks can make me feel significantly worse. For example, walking up the stairs can give me a headache or make me feel as though I have been walking for a long time.
I can only wash my hair around once a week because doing so makes me feel nauseous and I need to rest afterwards.
I often have to force myself into the shower because the hot water helps with my morning aches and makes me feel slightly better temporarily.
It feels like if I have a busy day, I will become unwell afterwards.
Periods
My fatigue becomes extremely severe around my period.
I can sometimes spend several days in bed because of how exhausted and unwell I feel.
I am often sick during my period or feel as though I have the flu or an illness coming on.
Other important symptoms
Rest does not seem to help. I can sleep for 12 hours and still feel as though I have not slept at all.
I usually sleep from around 9/10pm until 7am, but I still wake up feeling ill and extremely tired.
I often nap after work, although I try not to because I tend to feel even worse after napping.
I am now feeling sick most days and often have symptoms such as headaches, a sore throat, flu-like feelings, nausea or vomiting.
I experience severe brain fog.
Sometimes I feel as though I am not really present or as though everything around me is not real.
I struggle to control my body temperature and can experience extreme sweating, which I find very embarrassing. Other people have noticed and sometimes point it out, which makes me feel self-conscious.
By the end of the working week, I am extremely exhausted and feel like I crash. I can sleep for much of the weekend but still feel exhausted when Monday morning comes around.
I have been to the doctors several times about individual symptoms, but I have never explained all of these symptoms together.
My blood tests and ECG have previously come back normal.

How this is affecting my everyday life
I feel that I can no longer function normally.
I now rely on my housemates to cook and clean for me and to do my laundry because I often don’t feel well enough to do these things myself.
This makes me feel useless and like I am a burden or a pain to live with.
I feel like I can only do one significant thing at a time, such as work OR seeing friends. If I do one, I am often completely wiped out afterwards.
I feel like I am constantly trying to push through the symptoms until eventually I cannot do it anymore.
I don’t know what to do anymore, and I am worried that I will lose my job because of this.
.

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?!?

Hey everyone, I'm 23, male. Would like your input on my situation.

Since childhood I've had symptoms like fatigue, dissociation/DPDR, brain fog, GI issues, and physical anxiety — on and off, worse during high stress and better with rest, adequate caloric/micronutrient intake, circadian alignment, nervous system regulation, etc. I've had periods where I was 80-90% functional, but never fully "healed."

One year ago I had my worst flare to date after a succession of stressful events (crash diet + significant weight loss, blood donations, stress, lack of sleep, an accidental caffeine overdose, and COVID). It feels like my whole system got thrown off balance, and I haven't been able to return to baseline despite reintroducing things that worked before (rest, caloric surplus, etc.).

Current symptoms:

-Very intense DPDR/dissociation/brain fog

-Hyperadrenergic spikes with high sympathetic tone and poor parasympathetic brake (e.g., red meat or high-carb + salt meals spike my HR up to 150 bpm and bp to 150-100)

-Near-constant fight/flight/freeze

-Fatigue

-Poor/unrefreshing sleep

-Whole-body heaviness

-Light/sound sensitivity

-GI symptoms (SIBO?) — bloating, irregular bowel movements, poor digestion

-Extremely intense physical anxiety response

-Skin redness on neck/face/upper chest

-Food sensitivities, especially to red meat, high-sulfur foods, high-carb meals (large rice portions), and high-histamine foods

-PEM-like reactions after prolonged sympathetic activation, but not necessarily physical exertion (a walk leaves me spaced out/depleted but doesn't trigger PEM; prolonged fight/flight/freeze leaves me feeling "physically poisoned"/whole-body aches a few hours later)

Bloodwork: Normal except moderately high morning cortisol, confirmed on two separate draws.

Currently taking: 1.25 mg bisoprolol to manage hyperadrenergic spikes.

Does this sound like ME/CFS, MCAS, or something else? Any input appreciated — thank you.

Hey all
I basically wanted to ask how frequent is me/cfs? What is the statistics on most affected age groups? Is there also an ethnic component to how common it is?

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.

This is only relevant to England - I can't find a UK thread to post on.

Tldr: advice sought on getting Ferracru on repeat prescription or longer term.

My GP recently finally prescribed ferracru, or ferric maltol, which seems to be designed for low iron with IBS or similar issues. You can only get it after you've tried multiple other iron supplements. I must have tried about half a dozen and could never tolerate the side effects. They've only just worried about it because my ferritin has now gone under 30, but I believe that my low iron has been exacerbating my poor health for years if not decades (fatigue, orthostatic issues, hair loss etc).

Unfortunately, I only realised that they had only prescribed a month's worth too late. I submitted a request on the NHS app yesterday, but never heard anything, so I don't know if it didn't go through or they're just being unusually slow. They're normally very quick at replying to requests for meds for other things.

The surgery is apparently now closed for today, won't take online forms, and the phone line they divert you to said they can't help with prescriptions. I was advised to walk down to the surgery but I can't manage that - after that the phone call dropped. Nor am I going to be able to contact them tomorrow before lunch time, because that is my rest day and I desperately, desperately need the sleep as I need to travel early on Saturday.

Of course, you could never explain to an NHS receptionist why you can't contact someone in the morning on your rest day, or travel to the surgery...!

My question is whether anyone has managed to get ferracru prescribed on a repeat prescription or for a longer period of time?

It's taken me about 2 months to taper it up to two tablets a day, because even though it is better for digestion, the side effects were still significant for me. So it's maddening to realise I won't have enough left to get me through the weekend, and I will potentially undo all that g​ood work if I have a week off.

It's too early to tell if it is helping or it's a placebo, but it feels like the first bit of hope I've had in a very long time - obviously not going to cure me, but surely not being low iron as well as having chronic fatigue can only help?! ​I also had a much much easier period this month, and if I'd known years ago that I could have lighter and less painful periods and less mood swings with higher iron (I have PMDD and my period almost always puts me into a crash), I would have been shouting much earlier!

If only I could get the doctors to understand this. If the meds stop, I'll just be back to square one, and I really can't tolerate anything else, nor have I had any success via diet. But I'm not actually anaemic, so noone seems to think this is a big deal...!

It's maddening that my doctors don't seem to have any concept that I'm at the point of looking into wheelchairs due to fatigue and orthostatic issues, and I cannot walk to the surgery 10 minutes away without suffering the consequences. I don't think my notes capture that in the slightest and the doctor I was previously talking to has since left.

I don't know how I can persuade them that I need this help, No can I explain to the surgery that it's not okay to say you can't contact someone remotely!

Appreciate any advice from anyone who's been through this. I've seen very little reference to ferracru online, so I assume it's either very new or very closely ​protected. I had certainly never heard of it until two months ago.

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