#c.f.s./m.e.

[disabled-sapphic]

I don't mean to brag but I did get complimented on my wheelchair driving recently 😏

[mekare-art]

Reporting on Long Covid Taught Me How to Be a Better Journalist

Covering long Covid solidified my view that science is not the objective, neutral force it is often misconstrued as. It is instead a human endeavor, relentlessly buffeted by our culture, values and politics. As energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity. Societal dismissal leads to scientific neglect, and a lack of research becomes fodder for further skepticism. I understood these dynamics only after interviewing social scientists, disability scholars and patients themselves, whose voices are often absent or minimized in the media. Like the pandemic writ large, long Covid is not just a health problem. It is a social one, and must also be understood as such. […]

In covering conditions like long Covid and M.E./C.F.S., many journalistic norms and biases work against us. Our love of iconoclasts privileges the voices of skeptics, who can profess to be canceled by patient groups, over the voices of patients who are actually suffering. Our fondness for novelty leaves us prone to ignoring chronic conditions that are, by definition, not new. Normalized aspects of our work like tight deadlines and phone interviews can be harmful to the people we most need to hear from.

Ed Yong, New York Times, Dec. 11, 2023

Excellent article and the comments are full of people praising not just this article, but all the Covid 19 coverage by Ed Yong.

[runixa]

It's distressing sometimes how much like... my boy and mind can be messed up in complementary ways that build on each other.

My brain is generally primed to like... idk. It's hard to explain, but to connect things that aren't connected. To see a bad thing happening as a punishment for doing or not doing something else.

Or to think that if I eat this thing and it is in any way "dirty" then more badness will leak into the world (general example)

But then I also have m.e./c.f.s. so like....

I had a really good day recently. I did a lot of stuff and it was wonderful.

But now I'm in bed, in pain, dizzy, out of sorts, weak, nauseaus. And I'm going to need to keep resting in bed for most of the week, because I have something in a week that I really want to be able to do. But who knows if I can.

And it's so hard to convince myself that this isn't a punishment. That this isn't "you had a good day, but you don't deserve one, so now you get a week of hell." And I don't know how to convince myself that's nonsense. And I don't even have the energy to

[nerianasims]

We desperately need help. We can’t go into the streets shouting and shutting things down regularly. And so we’re very easy to ignore. The government can pretend we don’t matter. That we don’t even exist.

Thinking about us is scary. The next time you’re ill, this could become you. So people look away. When really they should be saying, “Holy shit, the next time I’m ill, this could become me, so let’s get a cure!”

[aureliacetinn]

happy first #disability pride month post

its the pathfinder 2e and dnd backgrounds optional rules for my condition

m.e/c.f.s

inside other than info on my condition is info on background notes for gms

and 3 tables covering mild to severe m.e

and an optional variant where the tables only give you flavour instead of mechinal issues

the idea is to roll once every day or as much as you like after picking what version feels right for you

this was done for me awareness as well as a personal desire to see if my condition can work in these universe and it can

ofc!

its pay what you wants so enjoy!

[fruitsilly]

hi!! i'm asking bc of your poll on disability/arospec. i hope it doesn't bother you and i know that some cases are "in the border" of ablebodied/physical disabled and it all comes to each individual. but i wanted to ask your opinion on this. i call myself ablebodied bc i don't want to invade spaces, but i've seen some comments by physically disabled people that would consider me physically disabled 🤔

my eyesight is so bad that i wouldn't be able to keep myself safe on the street if i weren't wearing glasses and were on my own. but i have no problems at all when i'm wearing my glasses and i live in a country with free healthcare + my insurance gives me a free pair every year so it's very unlikely i end up in a situation in which i can't get new glasses if something happens to the ones i have. also i could have surgery for free when i turn 25 and it's probably i won't need glasses anymore. i don't want to, but it's an available option...

also i have some minor problems on my hips and feet (one of my hips is slightly taller than the other and i have a few problems on the way i distribute my weight on my feet for some reason). i need to use orthotics and running shoes (that does suck cost-wise lol) bc, if i don't, i can't walk more than a few blocks before my hips and legs start hurting. but with the shoes and orthotics i can walk as much as i want to pain-free and i can even train like doing squats and that kinda thing.

bc of that i call myself ablebodied. but also idk if i would still call myself ablebodied if my situation was different (ej: being poor in a different country, so not being able to afford glasses or orthotics or good shoes and having to walk long distances constantly in pain or having a physically demanding job in that situation). what do you think?

sorry for the long ask!!

I think it all depends on what's comfortable for you! Yes, if I was in your situation I'd probably call myself disabled but I'm not you.

You're absolutely right about people existing on the borders and self descriptive vocabulary is up to the individual. If you're happy calling yourself able-bodied, go for it! If you've been wondering about calling yourself [physically] disabled, try it, see how you feel; you can always go back to calling yourself abled.

May I also suggest the term "visually impaired"? I technically have a visual impairment (severe astigmatism and visual snow that can't be corrected with glasses), but I don't consider it a disability because I manage fine with it and it doesn't disrupt my life as much as, say my C.F.S./M.E.

In short everyone considers and experiences things differently and yeah. Ultimately the language we use to describe ourselves is up to us. I don't know what to say but I hope this helped you 👍

[isfeed]

Protesters So Ill, They Couldn’t Get Arrested

Protesters So Ill, They Couldn’t Get Arrested

Long Covid brought attention to M.E./C.F.S., a long-ignored illness whose sufferers are too sick to accelerate research by making trouble the way AIDS activists once did. Source: New York Times Protesters So Ill, They Couldn’t Get Arrested

[sleepthemoon]

It's 5.05pm and I've just got out of bed for the first time all day to go to the toilet. I'm back in bed now and my breath is nearly recovered.

I used to watch other kids panting like this after the 100m race and wonder what their problem was. Now I'm the same after a 10m pilgrimage to the bog. Hell's tooth.

[terapiadehilos]

Today is M.E./C.F.S. awareness day. A while ago, @prillytee from the @chronicmarketplace asked the M.E./C.F.S. community what would we do if we were well tomorrow, and proposed we create a piece of art with out answer. Many artists have poured their hopes and wishes to create their answers in different mediums, which you can see in the video I shared in my stories and The Chronic Market has shared in their feed. This is mine.   Let me preface this by saying that I am one of the lucky ones. I can function, I can work, I can get out of home if I need to, I can lead what to outsiders may look like a normal, ordinary life.  And yet... Of all the things this illness has taken from me, the one I really wish I had back is the ability to be the mom my kids deserve to have. The mom that goes to all the functions. The mom that walks them to school. The mom that plays with them on the floor. The mom that can listen to a full recount of their day, even if it lasts forever. The mom that is there. What I miss is not who I was, but who I could have been for them were it not for ME-CFS. Mom guilt is overwhemingly real, and when dealing with a chronic illness even more so. It's the side effect I wish most away.  If tomorrow I was well, I would be the mom my kids deserve to have. And you, my fellow M.E./C.F.S. warriors? What would you do if tomorrow you were given back all the energy that chronic illness has taken away? #mecfsmom #mecfs #mecfsartist #mecfsawareness #mecfsawarenessday #chronicillness #chronicillnessandme #motherhood #spoonie #spooniemom #spoonieartist #ifiwaswell #momoftwo #embroidery #embroideryisart #embroideryhoop #hoop #bordado #fatigacrónica #diamundialdelafatigacrónica #encefalomielitismialgica #myalgicencephalomyelitis https://www.instagram.com/p/COx-utyLzb6/?igshid=1eeiigmejet5x

[stilllsurviving]

when you can't sleep because your skin hurts so much that even the touch (not pressing) of you fingertips or a bedsheets makes you cry in pain.. thanks fibromyalgia..

[a-typical]

Then there’s myalgic encephalomyelitis/chronic fatigue syndrome, an ailment that can leave previously healthy people bedbound and severely limit their physical or cognitive abilities. As many as three-quarters of M.E./C.F.S. patients trace their illness to an infection. But these patients have long been battling neglect and suspicion, with minuscule research devoted to the condition.

M.E./C.F.S. patients were among the first people to raise alarms about long Covid in the spring of 2020, quickly noticing that a subset of long Covid patients seemed to suffer from a very similar ailment. Since then, the number of studies showing connections between Covid and a variety of chronic disorders and later medical problems has grown, as well as the recognition that the coronavirus is not the only one with such links.

Recently, Danish researchers found an association between neurodegenerative disorders such as Alzheimer’s and Parkinson’s and not just Covid but also influenza.

Studies have shown a heightened risk for cardiovascular disease from Covid and the flu. A randomized study of heart patients found that those who had been vaccinated against influenza had a 40 percent less chance of death within a year. (source)  

[chronicallyhopefulblog]

Quotes about M.E. by Dr Nancy Klimas: They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy. Most patients with Chronic Fatigue Syndrome have non-restorative sleep. And that comes from a lack of deep sleep which is called Slow Wave Sleep in the sleep clinic - it's very limited to none. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. Less than half the doctors in this country know the name of this illness. I don't know another illness like that. - Dr Nancy Klimas is the Director at the Institute for Neuro Immune Medicine at Nova Southeastern University in Miami and Ft. Lauderdale, Florida and Director of Clinical Immunology Research, Miami VAMC. _______________________________________ #MyalgicE #MEcfs #pwME #SevereME #MyalgicEncephalomyelitis #cfsme #MillionsMissing #PostViral #EndMEcfs #Isolation #Housebound #InvisibleIllness #InvisibleDisabilities #ChronicIllnessWarrior #ChronicLife #SpoonieLife https://www.instagram.com/p/COfcPoyDJGm/?igshid=gf16vur45mdt

[aliceellablog]

CBT 1 - Alice 0

16/11/2017

So I'm fucking miserable and I'm gonna write about it. If you don't wanna hear it (don't blame ya!) don't read! And if you do, well…. Misery loves company eh!!

So last blog I explained how rubbish things had been and that I’d made the decision to really be positive (LOL) and be really dedicated to doing CBT (cognitive behavioural therapy) and GET (graded exercise therapy) to try and get a bit better and have more consistency.

Well I fucked that right up didn’t I!

I've really been trying and have made no progress. I guess I haven't got any worse at least... but you're meant to do your baseline amount every day (in my case a 25min walk) and NO more and then build very slowly from there each week-

I messed it up so many times all for various reasons - some of them unavoidable like being in hospital and them making you walk around 5 different bloody floors giving in different blood samples and forms etc, some like being stuck in a queue in the supermarket (should I just leave the trolley there and then go home with no food?) and then days when I felt so ill I didn’t make it out the house... man it's tricky.

So anyway, a month in and I am still trying to have 4 good days in a row where I do 25 mins walk so that I can then increase! -

However, now I'm in bed with a throat infection / coldy thing and it'll prob be a while before I get back to it. Balls!

I've been reading lots about other methods of getting better from this thang (M.E./C.F.S), and a lot of them include positive thinking so that you don't get worse or aggravate your symptoms by releasing the bad chemicals when you're stressed or upset... I agree with this but I am just finding it too hard to be positive at the moment…and like, I know I have a proper actual illness so is thinking positively actually going to make me better??

It's like I am constantly TRYING to be in denial because whenever I allow myself to actually think about the reality of what my life is right now I feel genuinely heart broken.

When someone says to me 'how are you today?' How am I meant to reply to that?? Most of the time I ask them how they are instead or skip the question and that seems to always work... but it's really weird like, if I say 'I'm ok thanks, you?' It's like I don't want them to think I'm fine because I am so NOT ok!!! And I want them to understand obvs…. but then I can't say the truth every day? Cos I'm sure it's not fun to be my friend and deal with this all the time #awks -

But then why do I have a NEED for people to understand?? Why do I care so much what people think about me? - I think that’s why I find it hard to do the positive thinking / lightning process thing as you have to literally lie to people - reply to the how are you’s with ‘Yea I’m great thanks’ and hide it all. AH! My head is such a mess... I’m sure I sound genuinely mental right now... but I kinda just feel like giving up. 

I literally have friends who I have reached out to and told just how bad I am feeling - even cried down the phone to them and they are obviously as nice and as caring as they can be at the time, but once they hang up of course they are back into their own world (as I am mine) and I don’t hear from them again. 

I think it’s a really tough position to be in, because its like, the more often you are unwell / stuck at home etc, the more you need people to be there for you, but the more wearing it is on them. 

I don’t blame them - it’s like the friend who keeps getting back with her ex even though you are there for her through every breakup and keep telling them not to - (by the way I have SO never done that.....) LOL... where was I... yea so it’s like ‘not again!’ in peoples heads, but I’m not doing this on purpose!!! 

Thing is, I know I have SO much - family, friends, a roof over my head - (although to be honest not necessarily for long as I have no income and... well...rent!) - food, water, I can most days look after myself - (shower and cook for myself etc) - but I just don't feel fulfilled, or happy.

I feel so fucking miserable. There I said it. I hate it - I can't do the one thing I want to (my career) and it's because I'm not well enough!

Like, it's just so frustrating. And then when I have little good patches I'm so bloody desperate that I start booking in sessions or gigs and then having to cancel them or doing one and then being so tired after (I'm talking weeks in bed) that I wish I'd never have done it!!!

It's been a few weeks now since I did a really cool nail-art job, and even that has completely messed me up. So even though I’ve had to put the singing and songwriting on hold and try and focus on being a nail technician and working from home, I'm starting to face the same problems- like getting awesome opportunities with THAT career and then being frustrated that I can't do them either!!! UGH!!!

I wish I had like, just normal problems… does that sound weird?? Like I wanna be upset because a boy I like isn’t texting me or because my boss is being a bit of a dick, or I twisted my ankle playing tennis (RANDOM) But instead I’ll listen to my friends (rightly so) complain about all that kinda stuff while my head wants to explode. Don’t get me wrong, I’m not saying I’m the only one with real problems, and I am only comparing myself to the friends and family I see or speak to like all the time, or to the classic ‘instagram life’ I trawl through every day... I’m just venting, and that’s whats on my mind- which is kinda the point of this right?? 

Is everything relative though? Its so shit because I think I should feel lucky for all the great things I DO have in my life, but then when you feel so unwell all day every day, its really hard to do that.

Even the smaller things have been harder more recently too, like the one time my friends and I all booked in to go to the cinema together, guess what?? I wasn’t well enough to go. The one time it's something I should be able to - it's a bus straight there and back, and then being sat down the whole time, and I just didn't feel up to it at all. Fuck sake. Although…. They did say the film was shit lol.

Anyway, I do want to ask y’all some questions while I have you here!! - Has anyone reading this had M.E. and got better? Or know anyone who has?

And if you have a chronic illness, how do you cope?? How do you learn to accept it and be ‘happy’?

Oh, I’ve got a good one… how the hell do ya pay rent when you’re not well enough to work but too ‘well’ to pass that bloody PIP benefits health test thing - (bloody wankers think that because I can lift my arms above my head I am obviously well enough to work a full time job..yep… that’s how it works!)

Ugh, anyway… is it weird that I feel better for writing all that?! I'm not sure, all I hope is that anyone reading this that really can relate feels less alone. That's another thing. It's so lonely and you are the only person who truly knows how much you are struggling and the only one who can find that inner strength to carry on. But we HAVE to. I think of the people who truly love me and how much love and support they give me - I carry on for them, and in the hope that life will turn around some time soon...

So for now I will carry on with CBT / GET every day - once I get over this stupid coldy thing, and maybe 2018 will be my year eh? ... ok I say that every year and look what happens 😂🙈 

PLEASE message me if you’ve read this and wanna chat :) It makes me so happy to hear from ya and kinda gives this whole thing a bit of purpose :) x 

My website: www.aliceella.com

Instagram: @aliceellagram

Nail art instagram (accepting bookings now!): @aliceellanailart

[cripthevoteuk-blog]

Disabled in Theresa May’s Britain #29: Victoria

From Lincoln

It started a couple of years ago when I was moved from DLA onto PIP. I've been recovering from severe C.F.S/M.E for several years, slowly moving down the bands of DLA so when I didn't get PIP, I didn't appeal. The PIP criteria were more strict than those for DLA had been, I didn't really meet the new criteria and anway, I thought, one more year of degree and recovery and I could try applying for part time work. In the mean time I'd just have to budget hard and use my savings to make up the short fall. It didn't seem worth fighting to be told no again when I could put the energy into more important things like recovering and finishing a degree I expected to be a big step towards being independent for the first time in my life. 

It was difficult but I was managing until they told me I had to apply for ESA a few months later. Over the course of the ESA application, which went on for about a year, I became more and more scared and hopeless until I was referred for help because I'd become seriously depressed. The application process was horrifying. The criteria they were using to decide whether I was fit for work were insane, literally insane. Can you push a button with at least one hand? Can you put something in a coat pocket? Do you only pee on yourself sometimes? There was nowhere at all to talk about how exhaustion is a real problem for me, and frequently puts me in danger. The assessment was a farce. Getting lost multiple times trying to get to the assessment and collapsing when I got there became "Was out of breath on entering but seemed fine". Being in pain but not taking pain killers because pain medications don't work well with my condition became "well you're not in any real pain then". Putting on a cardigan and reaching for my bag counted against me. 

A few weeks later I was declared fit for work and the worst part of the process began. Job Seekers allowance wasn't anywhere near enough money for me to live on. I economised down to basic utilities only and I was still losing £5/week before I paid for any groceries. If my best friend hadn't started paying for my weekly food shopping a couple of months into this, I don't know what would have happened to me, I couldn't even get out to use a food bank. The money certainly wasn't enough to pay for transport to the job centre so I walked, 4 miles, every time. It hurt so much and I collapsed multiple times when I arrived. They even paid for a taxi home for me a couple of times, I think out of pity. The disability adviser I had briefly (before the position was removed from the job centre) was lovely, she moved my appointments downstairs when it became obvious I wasn't safe using the stairs and did her best to help me. 

The first time I went into the job centre the lady I spoke to apologised to me. She said I clearly shouldn't be there. Not everyone at the job centre was as helpful. When I found work I could do (freelance over the internet for a company overseas) one of the advisors told me she wasn't sure it was legal but I should take the job and they'd decide whether to prosecute me afterwards.  One of the other advisors yelled at me for my entire appointment because she couldn't understand my claim and why I was allowed to look for work for less than the normal 16 hours/week. 

Trying to look for work and make my job centre appointments was making me sicker and sicker and I had to drop out of my degree three months away from finishing which felt like giving up any hope of looking after myself ever again. Recovery in c.f.s/m.e. is all about sticking to sustainable activity levels that you increase very very slowly, if you make me go beyond those levels regularly, I get sicker very fast. I even had to stop going to therapy for my depression because I was so exhausted by the time I made it to the appointments, I couldn't talk coherently.  I also had to start using a walking stick and wheelchair again, after YEARS of physiotherapy and work that had given me 6 months of blessedly mobility aid free walking. That was the last straw and after year of struggling things were finally bad enough that I could reapply for PIP. I was hopeful because things had become bad enough that this time I had a wealth of recent medical evidence from my GP and two specialists supporting my need for help and my inability to work.

My assessor was appalling. I've seen copies of the report she wrote since, and a lot of it doesn't make sense. By that I mean that what she wrote isn't in coherent sentences and several parts directly contradicted things she'd said in other places. The parts that did make sense accused me of faking a fall during the physical assessment, said that because my fingers didn't dislocate when I was playing with a scarf tassel during my interview I couldn't possibly have problems using my hands. I was told I'd used too many intellectual words to be cognitively impaired and that because I'm overweight I couldn't possibly be struggling to eat regularly. I was also told that my Drs and specialists were not considered to be impartial sources of information about my condition so that the decision would be made solely based on my medical records. I was refused but this time, I decided to appeal. It took months, a no at mandatory reconsideration and a final yes at tribunal but I had a low rate of PIP now and could afford to eat and pay off the debt that I'd been accumulating to pay for utilities and food. I used having a fall back income to take the risk of applying for ESA and they've awarded a basic rate of that to me while they organise a medical assessment. I've been waiting for the medical assessment for a year now. 

At the time of my PIP tribunal, the panel strongly recommended that I re-apply for PIP immediately because it was obvious that my condition had deteriorated. I've chosen not to do that because I can mostly manage on what I have and I'm too scared that I will lose the support I do have if I get another crooked or incompetent assessor. 

My health is still very much worse than it was but a few months into getting both benefits and being able to eat regularly and I've at least stabilised. I tried to involve my MP and legal aid because I genuinely believe I've been discriminated against, abused and that my human rights have been violated. Legal aid has refused to take my case despite the lawyers I've spoken to believing I have a strong case. All that talking to my MP has done is a letter from the DWP essentially implying that I should be grateful for being allowed to seek work at lower than 16 hours per week because of my condition and that I should be grateful to be receiving help at all. 

The last two years has broken me in so many ways. I don't feel safe any more, I'm always scared. I'm still waiting on the ESA decision, I could be declared fit for work again at any moment and I know that if I am, my health will start to worsen again until I'm in hospital or a home or I die. I work hard every day to recover as much as I can before that inevitable fit-for-work decision happens to me again because it's the only hope I have, slim and desperate as it is. I've been shown again and again that I'm not trustworthy because I'm disabled, that I don't matter because no one cares about me, that there is no need for the expectations I'm expected to meet to make any kind of practical sense. I truly believe that someone, somewhere has decided that killing off a generation of disabled people is a fiscal or political necessity. It's the only thing, awful as it is, that would make any of this make some kind of twisted sense. 

[yesqualitykingdomcollector-blog]

Diet Vs Exercise - How Do You Really Lose Weight?

The balanced type can eat the most variety of food because they do well on higher protein and fat meals, as well as the lower fat and protein ones. Basically what they eat doesn't make too much difference to how they feel. They are classic omnivores, able to eat from a whole range of foods. They can miss a meal but will feel it more than slow oxidizers. Personality-wise, balanced types are happy relaxed balanced people.

Alex Howard is the author of "WHY ME? My Journey from M.E. to Health and Happiness" and founder of The Optimum Health Clinic, an award-winning clinic specializing in M.E./Chronic Fatigue Syndrome/Fibromyalgia based in Harley Street Clinic, London, UK. The clinic has treated over 5,000 patients with M.E./C.F.S./Fibromyalgia in over twenty-five countries around the world and is currently running a two-year clinical trial in conjunction with two top universities. A free information pack, including a 75 documentary about the clinic and its work, can be ordered from

Are you thinking about surgical intervention to lose weight? Before going under the knife, you should consider an innovative alternative to weight loss surgery. I call it the calorie barricade concept.

According to the current National Institutes of Health (NIH) statistical surveys, 1/3 of US adults are obese. The Centers for Disease Control and Prevention reported that obesity may become the leading cause of mortality in the United States by 2005, with a death toll of 500,000 per year.

https://supplementaudit.com/panalean-review/

https://supplementaudit.com/gojilite-review/

https://diet4today.com/unlock-your-hip-flexors-review/

https://diet4today.com/solomons-secret-review

[sleepthemoon]

On the one hand, my mum complains I never do anything around the house and uses it against me to dismiss my anxiety, telling me I haven't a right to complain until I contribute and should be grateful.

On the other hand, when I say I want to try to work towards moving out, she tells me I can't, that I can't look after myself, I can't work/do chores/contribute, so there's no point in me trying to get PIP.

You can't have it both ways, mum! It's like she wants to keep me under her thumb to keep battering my mental health, which is exactly the reason I need to get away from her! Then she makes me feel even worse by telling me how incapable I am and how there's no point in even trying. Even if I can't move out, it would really make me feel more at ease if I at least had the money for when I can, so that obstacle is out of my way.

Despite not helping me whatsoever and telling me it's not going to happen because she needs to look after me as if she wants to look after me, she at other times tells me she doesn't like looking after me, doesn't want me in her way, would love me to move out.

Then, suddenly she wants me to get PIP because she wants money to buy a bigger house. Which is of course for my benefit, so then she uses that against me all the time. If ever I get in her way, she tells me off on the basis everything she does is for me. It doesn't matter how upset she makes me, she can always find a way to guilt me and make herself the victim and me the ungrateful, unreasonable teenager.