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[chronically-persistent]

The thing about becoming disabled is that it touches every part of your life—which means it changes every part of your life.

Your own self image will likely be completely broken down. You are not who you thought you were, and your life will not be what you thought it would be. It’s up to you to decide how you want to rebuild yourself. It’s up to you to figure out how to even begin to do that.

Likewise, the way you see the world around you will change. You start viewing everything through a different lens. You have to decide how to interpret what you see, and what you do about it.

You learn which parts of you are intrinsic, unchangeable. In some ways, you become a new person. You learn things about yourself and about the world around you that other people might never have to learn.

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me: I'm done grieving, I already accepted my illness and all it brings with it, it's totally ok

also me on a random tuesday: my life is never going back to what it was, I'm never going to be able to do the things I loved the most the same, it's over and I gotta learn to live with that but it's kinda impossible because I'm so young and I had so many dreams and so many things I wanted to do that I can't anymore, at least not without all this pain and suffering

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Today is #WorldIBSDay I wish when I was diagnosed with #IrritableBowelSyndrome the gastroenterologist had been on the look out for #MyalgicEncephalomyelitis which I had all the symptoms of at that time & is often comorbid. It would likely have helped prevent my health deteriorating #MEcfs #CFS

[chronically-persistent]

Hello! I am not a doctor but as someone with ME and POTS, I definitely see this as a potential red flag. Before anything though, if possible, I would recommend checking your blood pressure along with your pulse.

POTS has many different symptoms, but a spike in pulse (by 30bpm at least) and a drop in blood pressure when standing can indicate that your heart is having a tougher time pumping blood around your body. This coupled with dizziness, lightheadedness, vision loss, etc. can definitely indicate a potential diagnosis.

It can be incredibly difficult to find doctors who take these issues seriously, but don’t give up! There will be answers for you out there! I would certainly discuss this with a trusted professional if possible

Question for my internet friends with orthostatic intolerance (especially POTS) I got a blood pulse oximeter to see if I had heart rate changes when sitting and standing and I’ve only had it for a day but I get dizzy sometimes after sitting or standing too long and I think I have ME/CFS which can cause OI.

Anyway what I’m wondering is if it’s normal for your heart rate to spike a lot after standing but then return to somewhat normal. Like if I have a resting heart rate of 82bpm that jumps to like 119bpm (sometimes higher) when standing up but goes back to like 96-105bpm by the time I’ve been standing for a minute is that normal because it goes back down or still really unusual. I’ve also never passed out but I get dizzy and lightheaded when I originally stand up and sometimes while walking or sitting.

I’m fully aware you all aren’t medical experts and I’m not taking this as medical advice, just trying to figure out whether I should be worried enough to research/ask a doctor.

If this isn’t normal should I be looking into POTS as well as ME/CFS?

[chronically-persistent]

I think the reason why people want to know what's "wrong" with disabled people is because they want to reassure themselves.

They want you to say you were in a horrific accident or that you have a well known and treatable disease because they think they can stop it happening to them.

They think their health is a given because they aren't a dangerous driver/ an alcoholic/a drug user/obese/an unhealthy eater etc. Obviously this isn't true but it's easier for them to think of it like that.

Until one day they meet someone who did nothing. They're not really asking "what's wrong with you". They're asking "what went wrong" because they think they can avoid it.

So when they meet someone who made all the right choices, who was healthy, who was safe and one day woke up sick and never got better, it scares them because some part of them realises that it could happen to them.

They can exercise and eat a balanced diet and be as careful as possible and it doesn't do a thing and they can't do a thing about it. That terrifies able bodied people.

People like to look for something or someone to blame and they hate it when there's nothing there.

[chronically-persistent]

Okay, who’s gonna tell Professor Chris.

[chronically-persistent]

I am once again experiencing the Horrors™️, so you know what that means! ME/CFS information time!

Though often associated with fatigue and neuro-immune dysfunction, ME is actually quite prevalent in the gut as well. Intestinal and stomach issues are not uncommon, so here are a few to mention (these are not an exhaustive list, please add if you experience others!)

IBS: possibly the most common diagnosis, IBS can cause a whole host of lower GI dysfunction, including indigestion, constipation, diarrhea, and cramping. It can range in severity and form between individuals.

Gastroparesis: a paralysis of the stomach muscles that causes delayed and sudden stomach emptying. Symptoms include bloating, fullness, pain, nausea, and in cases vomiting. Let me tell you, this one’s a doozy.

Bacterial overgrowth: Unfortunately being chronically ill has consequences on the gut microbiome too, and some studies have shown evidence that individuals with ME/CFS (and its comorbidities like fibromyalgia and IBS) have an overgrowth in the small intestine, which causes side effects similar to those mentioned above.

ME/CFS really is a systemic illness, and if you are experiencing gastrointestinal symptoms, please seek the help of a trusted physician. If there is no one you feel comfortable speaking with, there are a few things I find help me.

Stay upright, slightly reclined if possible. Being completely flat makes me more nauseous and painful.

Small meals. Big meals only serve to instigate the nausea and cramping.

Avoid heat unless your guts are cramping, for example with constipation. Otherwise I find heat makes my nausea worse.

Try liquid replacements. I’m currently trying Boost, and have experienced good things with it.

This one’s the toughest, but avoid stressors. I have GAD so I never like hearing this but unfortunately anxiety and the gut go hand in hand. If you can try to distract yourself, it may ease the symptoms a little.

GINGER GRAVOL! If all else fails, these supplements work wonders for my stomach, and start taking effect in around 30 min. They’re last on the list because they can run a little expensive, but if you need relief fast, these are a life saver in my experience.

Stay safe out there, everyone, and feel free to add to this! These are just my sleepy, nauseous ramblings, and ME/CFS is not a monolith. I’d be happy to hear your thoughts and experiences

[chronically-persistent]

if upon being told about someones illness/condition, your first thought is to say “have you tried X?” i want you to step back for a moment and think to yourself “if i thought of X after hearing about this condition for the very first time, the person who has this condition very likely has thought of this and possibly tried it already”

we are tired of constantly being told to try the same things by people who didnt know our condition existed five minutes ago.

you dont need to offer any solutions or try to fix us. i know it might seem like a polite thing to do or that it shows you care, there are other ways to show us you care.

[chronically-persistent]

I heard previously that this Nancy Klimas study in South Florida has had recruitment difficulty.

So it would be good if it was highlighted widely

Links in image:

[chronically-persistent]

Unfortunately Long Covid patients are experiencing the same ableism that ME/CFS patients have for decades. I’ve had many doctors tell me to exercise, even one who told me that yeah, it’ll hurt, but you’ve got to do it.

It’s so frustrating that they ignore the bounty of evidence telling them to drop the exercise pushing. I’m seeing so many people suffering from medical neglect and abuse that could be easily avoided if doctors just listened.

I saw a great post here once that talked about exercise being the cheapest treatment for doctors - it’s not expensive like medicine, and it involves little to no thought on the part of the physician. Just tell the patient “you’re lazy, go exercise” and then hey, no one can say you didn’t try to help them!

My heart will always go out to Long Covid patients, and I hope we can band together for a brighter future, because we don’t deserve this treatment. The system has to do better.

it's so upsetting that the entire body of research on ME is being almost entirely ignored when study after study of long covid patients is consistently showing that not only do 50% of long covid patients meet the diagnostic criteria for ME (which is KNOWN to be post viral & caused by multiple kinds of viruses!!)

but that the mechanisms causing those symptoms are THE SAME. Same autoimmune dysfunction, same reduced anaerobic threshold, same mitochondrial damage!!!

things that are so specific to M.E.!!

and yet people are still trying to say long covid patients should exercise their way to not having M.E. symptoms despite DECADES of scientific evidence showing that it makes M.E. patients sicker and causes PERMANENT DAMAGE to routinely overexert!!

[chronically-persistent]

I am once again experiencing the Horrors of medications, so here’s some information about ME and drugs.

People with ME are more likely to experience side effects when taking medicine at therapeutic or lower doses. This is particularly true with medications targeting the central nervous system.

If you’re experiencing side effects that differ from the typical population, you could be experiencing medicine sensitivity- please talk to a trusted health care provider, as they may be able to help with a more tolerable dosage.

It’s a cruel twist of fate that so often we need medicine to help manage our symptoms, yet they may also cause more issues down the road. But if you ever have concerns with your treatment plan, they are valid and deserve to be addressed.

Sources and More Information:

[chronically-persistent]

Press release that is getting a lot of coverage: Long COVID ‘indistinguishable’ from other post-viral syndromes a year after infection

I think diagnoses like LC & ME/CFS are important for those ill after an infection to help adapt to the impairments, not get worse from pushing/having to push, etc I speak from bitter personal experience. I became ill an infection age 16 but was given no name for it. Initially I was fairly mildly affected. Unfortunately without a diagnosis I deteriorated until I was diagnosed aged 22 & remain severely affected 29 years later

The CDC found in their research that an earlier diagnosis led to a better prognosis in #CFS. This prompted them to run a multi-million dollar awareness campaign in the 2000s aimed at professionals & the general public to highlight the issue.

The ME Association have produced a free booklet "The Importance of Early & Accurate Diagnosis in ME/CFS"

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A popular article in the ME/CFS community that's in the Guardian today

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"But even if all UK doctors were actually familiar with the NICE guidance (an impossible dream, I know!) we still wouldn’t be safe. The guidelines say that GET should not be used, but they don’t explain why. They don’t acknowledge that exercise, or anything else likely to provoke PEM, can cause serious and lasting harm. The message clinicians get from the NICE guidelines (I mean, the tiny minority of clinicians who bother to read them) is that GET is ineffective, not that it is dangerous."

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“People with ME (and this includes those with long Covid who meet the diagnostic criteria for ME/CFS but may not have been diagnosed as such) will not be safe in healthcare settings until clinicians understand that every bout of PEM is dangerous because every crash could be the one that leads to permanent deterioration.”

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"Our advocacy needs to go beyond insisting that clinicians follow the NICE guidelines. We need to push for the medical world to recognise that PEM [post-exertional malaise] is an injury, potentially a very serious one - and treat us accordingly."

[chronically-persistent]

[chronically-persistent]

I’m so sorry to hear that! There is no shame in enjoying things, especially while you’re ill - I hope you are doing much better now, and enjoying your Pokémon :)

You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.

Joy is a universal right. And that includes us.

[chronically-persistent]

You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.

Joy is a universal right. And that includes us.