Agy Lena 🏳️‍🌈🇵🇱🇬🇧 @agy_lena Twitter profile

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

5 years

I will be attending the #MillionsMissing protest in London this Sunday for those who cannot because they are too sick

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

“I beat cancer” “Cancer didn’t stand a chance with me” “Cancer picked the wrong person” Obviously I shouldn’t even have to say that I am ecstatic for anyone who beat this awful disease however, we really, really ought to move away from this narrative that you are somehow

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

Two years ago today I made the biggest mistake of my life, I had the covid vaccine. I have not improved at all. @MattHancock wants to criminalise people like me talking about it so we quietly die off. They won’t research/treat these adverse reactions. Cheaper if we die.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

superior to biology if you have beaten a disease. So what is that supposed to say about those who died from cancer? They didn’t fight enough? They were too weak for cancer? Whether you beat cancer or not or any other disease, it has no bearing on your will to survive, fighting

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

Eight months ago today at 3:30 pm I made the worst decision of my life: I had the Covid vaccine. Every single day I cry and can’t come to terms with having made this grave, irreversible mistake. #COVID #VaccineSideEffects #VaccineSideEffects @theysayitsrare @DrAseemMalhotra

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

18 mths ago today I made the biggest mistake of my life. I had the c….d dart. Thousands of pounds +many treatments (conventional+alternative) later, I can barely speak to improvement. Made my existing condition drastically worse, damaged my legs +put me (mostly) in a wheelchair

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

spirit, determination and willpower. It is pure luck. You’re lucky that whatever treatment you had access to worked on your specific pathology. Not your mindset. Not your willpower. Nothing. Every person suffering horrible diseases regardless of whether they are getting better or

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

This dart was supposed to protect people like me. Instead it’s made my condition DRASTICALLY worse & damaged my legs. My life is a new level of hell. No one knows what is wrong with my legs. 13 months, countless treatments, ZERO improvement #CanWeTalkAboutIt #vaccineinjuries

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

not, shouldn’t be seen in terms of winning or losing. This isn’t a battle because your actions have no influence on the outcome. No one wants to be sick. No one wants to die. Everyone wants to get better and live to the fullest. Everyone wants to live.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

@Rob_Roos @BernieSpofforth Another nail in the coffin. Over 18 months severely injured. Don’t know how to come to terms with making this irreversible decision based on nothing but lies. Can’t stop crying. Daily.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 months

There’s a segment of the population that INSIST previously fit, healthy people like me ( #MECFS since 2017) collectively decided to lose well paying jobs we loved, independence, freedom, passions & joys because we suddenly became lazy and faking a disease #LongCovidAwarenessDay

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 years

1. People with #LongCovid : the reason medicine has nothing to offer you right now and your life is hanging in the balance with zero prognosis is because post viral diseases such as ME/CFS have been ignored, stigmatised and ridiculed as psychosomatic for decades.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

Hello from Mulheim! I am positive for microclots (mild to significant) and severe endothelial damage. I don’t have much in terms of hyperactivated platelets. I will be starting on triple anticoagulation with heparin injections. I do not have the lipid droplets. ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

9 months

I didn’t do anything to cause this. No pre existing conditions. No one in my family has chronic illnesses. Never smoked or taken drugs. Ate 10-15 portions of veg a day (no, not vegan). I was ultra fit. I worked hard & tried to live “right”. This illness kills without death #MECFS

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

20 months today. Unrelenting despair and regret. Yes, I’ve tried black seed oil, dandelion, pine needles, fasting, sera/lumbro/nattokinase, triple anticoagulation, apheresis, hyperbaric oxygen, red light and much more. NONE OF IT WORKED! WE NEED REAL ANSWERS! #vaccineinjuries

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

@theysayitsrare before they ban your account, I want to thank you for giving me the opportunity and support to speak up and be heard. This poison shot was the worst decision of my life and I’m paying severely. THIS many people injured cannot be “rare”. These darts are pure poison

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

When I got sick, I had just graduated with a 1st in biomedicine whilst working full time as a gym manager+personal trainer, was ultra fit, just bought a flat, rode a motorbike and climbed mountains for fun but @nataliesurely insists I gave all this up for a pretend illness #MECFS

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

11 months

Latest study shows profound and dramatic inability of the body in ME/CFS to adapt to exercise/stress. Amongst other things, 102 genes normally upregulated during +after in controls, do not kick in -in #MECFS AT ALL! It’s 100% physiological & has absolute F all to do with getting

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

11 months

Question for #LongCovid deniers: what’s in it for you? When a person with a previously full life tells you they have a life destroying, physiological, not psychological disease, considering they’re the experts, not you, why deny it? I know the answer but want to hear from you. RT

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

@lindy_lou_j This was me when I was struck down with a chronic illness. How about stop blaming patients for their condition?Chronic illness isn’t always a punishment for bad lifestyle choices.Chronic conditions can happen no matter how healthy you are. You shouldn’t be a dr if you refuse care

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

Don’t know if I should be grateful that the vaccine didn’t kill me & I’m only so severely affected that I can’t function at all bar getting up to eat. Death right now seems preferable. Maybe I should take the 2nd shot, that would finish me off hopefully @theysayitsrare @elonmusk

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

Long covid deniers: only the overweight, unfit, unhealthy, poor diet folks and the elderly get sick. Me and majority of the people I’ve ever come across with #MECFS or #LongCovid before onset:

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

10 months

I’m so fucking tired of #pacetrial scam “researchers” continuing to fight tooth & nail to lie about #MECFS ! “Deconditioning, resting perpetuates it…” Fuck you! I was not deconditioned & I fucking DESPISED resting! Pic in the gym at 5am! I hardly move now cos I fucking can’t!

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

19 months since the vaccine today. Countless supplements others claim helped them, various off label medications, 22 HBOT sessions, triple anticoagulation, apheresis to remove microclots, I can’t speak to any real or sustained improvements. Justice for people like me @elonmusk

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

The biggest tragedy of #mecfs & #LongCovid is that it strikes people in the prime of their lives. People who one moment were full of health, life, joy, potential, often exceptional level of fitness. People who had everything to live for, so much more to experience. Abruptly ended

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

9 months

It is extremely important for society to recognise that #MECFS does not cause “tiredness”. It is an EXTREMELY disabling, systemic disease that is literally incompatible with living. At the worst levels, patients are entombed in their bodies unable to lift their heads, speak etc.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

11 years ago 😢 trekking miles and miles a day in the Himalayas. Now I can’t even walk a couple of minutes outside most days. Life is hard and I never expected an easy ride but this disease is on a torture scale that no one unless they have it can imagine. Nothing compares.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

8 months

#LongCovid is trending so once again for the odious people dismissing it: I have #MECFS since 2017. Disease identical to half of LC. I have 3 degrees, incl 1st in biomedicine, trained hard, worked hard, had no days off, climbed mountains. Lost everything. I am not lazy or faking.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

#MECFS is UNEQUIVOCALLY the ONLY disease on earth where EVERYTHING that makes other people better, including people with other diseases: exercise, being outside, walking, sunshine, music, laughter, human contact, makes you worse. Sometimes permanently. How is this not world news?

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

Sometimes for a change of scenery, I lay on the floor. I’ve done everything in my power to get better. Failed. I spend 95% of my life laying down. Don’t know how much more I can take. I will never get better without a medical breakthrough. NIH HELP US! #MEcfs #longcovid #postvac

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

I just heard someone say cancer is everyone’s biggest fear. They’ve never seen a patient with #mecfs …😞

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

9 months

Why the hell is it so hard for doctors, journalists & even many interviewed patients in the media to describe #MECFS correctly? The information is out there so what is stopping you? M.E is not chronic fatigue & it does not cause extreme tiredness that interferes with ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 months

Here I am on top of Mont Blanc before I got sick @MeghanEMurphy . Tell me again I’ve lost EVERYTHING to fake victimhood and pity. Yes, these diseases affect more women but there are millions of men sick too. You won’t see them because they are house/bed bound like me. #MECFS

Meghan Murphy

@MeghanEMurphy

4 months

Why is it that I have never in my life met a man claiming to have "chronic fatigue," "long covid," or "fibromyalgia"?

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

10 months

FOR FUCK’S SAKE ⁦ @guardian ⁩ these people are NOT #MECFS researchers!!! They are psychiatrists with who built their careers on scientific fraud: making M.E psychosomatic! It’s their fault we have no treatments! Yes I’m fucking mad!! I’m tired of this!

ME/CFS guidance that discourages exercise is flawed, say researchers

Study criticises research method behind latest Nice advice for treating chronic fatigue syndrome

www.theguardian.com

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

People often talk about ME/CFS in terms of “there is no cure”. I don’t expect a cure. There are no cures for other chronic conditions. Sometimes life is tough that’s tough shit. But I EXPECT and DEMAND treatments that allow life comparable to patients of other chronic diseases ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

9 months

The stigma of #MECFS HAS TO END! We are not lazy or malingering! I was extremely fit, just graduated with a 1st in Biomedicine, just bought a flat +had amazing life ahead. I’ve lost EVERYTHING! Why would I give all this up to fake illness? Thank you for the segment Trisha @TalkTV

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

@theysayitsrare The vaccine was supposed to protect the vulnerable. It was never tested on the vulnerable. My one and only shot made my existing condition severely worse and has given me new unrelated leg damage. I am so desperate, I feel like killing myself. I can’t live like this. NO ONE CARES

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

Funny how many figures are popping up condemning #SupremeCourt decision and giving us the spiel about #mybodymychoice +consequences. Where were you when people wanted the same right not to be injected with a vaccine whose not rare side effects include severe disablement & death?

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 months

#MECFS gives an exceptionally unique opportunity of seeing how the world carries on after you have died.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

Seriously people, if you’ve recovered in 1-2 years, honestly shut up about never giving up hope & this helping your “mindset” and recovery. Try keeping that same level of hope for maaany years when not only have you not improved, all treatments failed but you’ve also deteriorated

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

40 years old today. Should be a momentous celebration… Instead… Another year of my life lost to this horrific disease. Another year in tears, alone, isolated, hopeless, not coping and floored by the weight of it all. Full post: #MECFS

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

I did not expect my life to end at 35. I thought I’d have a career, I dreamt of getting married, building a home life, doing normal things, seeing more of the world, living… I thought I’d have more time… 😞 #MEcfs #longcovid #vaccineinjuries

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

Just found out that one of our v… injured, someone I spoke to on messenger on the 6th, took his own life on the 7th. I didn’t know him well, I knew he took a turn for the worse & we were discussing medications. I can’t stop crying. I’m sorry I can’t comment on fb cos I’m banned

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 months

Being positive does not cure disease. Being positive does not cure disease. Being positive does not cure disease. Being positive does not cure disease. EFFECTIVE TREATMENTS DO. Being “negative” is a not the cause BUT the RESULT of insurmountable to the individual, suffering.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

7 months

Boris Johnson thinks diseases like mine are bollocks. Imagine calling cancer or MS bollocks… But it’s ok when it’s #LongCovid or #MECFS . Yep, I lost my bright future cos you know, suddenly I’ve become lazy & prefer to be housebound/22hrs a day horizontal than live #Covidinquiry

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

I once climbed mountains. Now I can hardly climb one flight of stairs, walk or stand. I need an electric wheelchair to get out on the days I am even well enough to be outside. Missing from my life for six years… #millionsmissing #worldMEday #MECFS #LongCovid #MEAwarenessDay

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

@stkirsch Welcome back Steve! Wish I had discovered you before I had my vaccine. You would have saved me 😢 19 months, zero improvement, all treatments failed. For some of us, there is no way back from this jab. At least until we have proper research. For that we need acknowledgement first

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

I have just learnt that a long covid group in the UK including drs have said publicly that this is not “just” post viral MECFS. There is a real pathology to be explored. How fucking dare they! I am furious! Who are they and has anyone challenged them? I am beyond insulted!!!

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

8 months

This was my attitude at the start of #MECFS . Had I spontaneously got better, I would have taken the credit and stayed in that arrogant belief. No excuse for anyone to believe this now as our voices are loud +visible: determination means nothing against this disease. Be humble.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

It endlessly blows my mind that a disease has existed for so many decades that takes out so many young, healthy, super fit, hard working people and turns them into total cripples & almost NOBODY cares or tries to find treatments. It’s like I’m in a twilight zone #MECFS #LongCovid

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

11 months

It is absolutely astounding that a disease can torture you so extremely yet not kill you. In virtually every other disease on earth, at this level of disability you would be dead. #MECFS defies everything we know about the human body & disease. Solving it will change humanity

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

6 months

My spirit is dead. My happiness and passions are dead. My plans, hopes and dreams are dead. My potential, career and independence are dead. My present and future are dead. My ability to function in society and at home is dead. #MECFS hasn’t killed me but I am as good as dead.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

8 months

Everywhere I turn I hear of people who overcame some odds because exercise saved them. Imagine a disease that takes away your access to this most precious coping tool. Exercise was my life. I now have a disease where exercise makes me MORE disabled #MEcfs #NationalFitnessDay

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

So many fools think #COVID19 or #LongCovid won’t happen to them because they eat well and exercise. Here I am around the time I got a virus that ultimately destroyed my life. I don’t have enough middle fingers for human ignorance @GeorgeMonbiot @Daltmann10 @HelpMyBreathing

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

11 months

Another young man dies by suicide due to #MEcfs as he felt there were no other options. The severe suffering, extreme symptoms, lack of care, ZERO effective treatment options, gaslighting and no hope put people in this place. IT IS CRIMINAL THAT DEATH BECOMES A VIABLE OPTION!

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

Imagine having a life where you spend every day of it waiting for the day to be over. Only for it to start all over again the next day. It’s not life. It’s torture. #MECFS #LongCovid #NotRecovered #vaccineinjuries #NEISvoid

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

I used to be strongly pro vax. My injury has been denied and censored as misinformation. There is zero medical help or research. The gov, scientists & msm encouraged hate and abuse towards people like me. I’ve been told I’m lying. I’ve been sent death wishes. I am now anti vax.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 months

Here I am 9yrs later a total looser and a nobody. My entire body and brain don’t work. I can barely look at an abstract of a scientific paper let alone tolerate looking at the whole thing or even understand it. Any moderate to complex cognitive effort causes torture in my brain.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

5 months

My last Christmas photo. 8th year no Christmas for me due to #MEcfs . Each year is worse than the one before. This year I deteriorated loads in the last few months/weeks especially. At this rate I might not be here by next Christmas. And yet… ZERO urgency to find treatments… 😞

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

People challenge themselves to prove they’re tough by doing ice baths, ultra marathons, working all hours… look at me juggling work with xyz… you name it…. Try living the life of an ME/CFS patient for one month…. Let’s see how tough you are…

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

A friend of mine with primary progressive MS said to me… “ your fatigue is a hundred times worse than mine…” She regularly does things I cannot even dream of. #MECFS is in a league of its own in term of debility. It’s so unique, it’s incomparable thus most cannot understand us.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

I am at my absolute wits end with hopelessness about my bizarre vax leg injury. I have no idea what to do or where to turn. I haven’t met a single person with this. Can’t stop crying. Please give me a retweet in case some specialist (prob vascular) can help @theysayitsrare ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

6 months

Me: I just want a real treatment so I can work and have a bit of a life and not suffer so severely 24/7. Them: Those horrible, aggressive, “militant” #MECFS #vaccineinjuries #longcovid activists… ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

“But it saved millions of lives” is not a valid excuse. My life matters. I am not acceptable collateral! I did not consent to being collateral! I did not agree to sacrifice my own life for others. I should have had the right to give INFORMED consent. I did not. This is thus GBH.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 months

According to #giselleboxer , life gave us this horrific illness so that we can find our true purpose in life🤡. Tell that to all who have died due to #mecfs +those bedbound for years/decades in dark rooms unable to tolerate human presence. Can this woman sink any lower? #acuseeds

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

11 days

I’m fucking tired of #MECFS PEM being described in a way that makes it sound like a temporary payback. Oh well, maybe it’s worth it then. NO! PEM can be PERMANENT! Exertion can make you PERMANENTLY MORE DISABLED! This does not happen in ANY other disease! I will die on this hill.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

Is there any doctor out there who can help me find out what is wrong with my legs since #vaccineinjury 😢😢😢😢😢 NOTHING that helped others helped me. Doesn’t fit into anything neuro a like GBS etc. I am beside myself and completely out of ideas. 19 months with zero improvement

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

Another unhappy #ValentinesDay .40 years old, whilst other people are on their second marriages, I am perpetually lonely & unlucky in love. I think I’ll probably die alone. Sick and alone. Basic things like love, companionship, support, safety & freedom to move your body denied😞

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

7 months

I don’t know why we call it resting. I am not resting. I am forced into horizontal position by this disease due to vile symptoms, because I physically can’t do any more and because even if I did, I’d get worse. Every cell in my body screams to move. It’s not resting. It’s torture

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 months

I’ve never felt so validated in MSM. I cried. Public belief is that #MECFS is being lazy, seeking attention, not pushing yourself etc. I couldn’t have been more hard working if I tried. This disease has taken EVERYTHING from me. It isn’t even life. MUST WATCH #LongCovid

Channel 4 News

@Channel4News

3 months

Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 months

The NHS #mecfs clinics are so useless that you actually have more to gain from not attending than from attending. You will actually be worse off if you attend as you will waste physical and mental energy on it. This is the state of care for one of most disabling diseases on earth

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 months

Here’s #Giselleboxer blaming #MECFS patients for not recovering. Silly us, we didn’t recover like her because we just didn’t believe. So she claims she “just wants to help people” 🙄 This is her modus operandi: gaslighting. Reminiscent of the lighting process scam. #acuseeds

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

I’m not going to kill myself. I’ve been thinking about it a lot lately & I’ve realised I’m absolutely terrified of dying. Not existing anymore. Never existing again. But I can’t live as I am. This disease is too horrific. Yet there’s nothing to make it better. So what do I do…?

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 years

2. There has been virtually no biomedical research funding in all this time as we were told it’s in our heads and sent to do CBT to cure our “false illness beliefs” and Graded Exercise Therapy to cure our fear of exercise (erm..yep... except many of us were athletes before M.E.)

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

I was born in 1982. I am nearly 40 years old and in 2021 there are just as many treatment options for M.E. as there were in 1982: none. Chance of my life back: none #meawarenesshour #LongCovid @DrTedros @NIHDirector @NINDSdirector @BBCHughPym @BBCFergusWalsh @GeorgeMonbiot

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

7 months

Seriously, what’s in the pipeline for neuro inflammation??? And I’m not talking curcumin, bacopa, LDN and other nonsense. Been there, done it, doesn’t touch the sides. I need a real intervention (and not psych drugs either!). So what is it going to be? My brain is damaged.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

A word of warning… I started getting sick in 2015. I did not meet diagnostic criteria (PEM) for ME/CFS until mid 2017 and in certain aspects possibly even early 2019. Whatever triggers ME/CFS can be set in motion long ahead of being obvious. Untreated abnormalities accumulate

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

I am an anti vaxxer & don’t give a fuck what anyone thinks. I’ve had every vax my whole life. I believed in the covid vax. I had one shot that decimated my existing condition & gave me new damage, my injury branded misinformation & my eyes were opened. I will never believe again.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 months

#MECFS should be called the suicide disease. Few other tortures in life push people to exist in such extreme, never ending suffering with absolutely no end in sight and virtually no hope, death is their only option. Even if they desperately don’t want to die… #longcovid

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

1. A super brief crash course for healthy people wondering what’s going on. HEALTHY FOLKS PLEASE SHARE THIS WIDELY AT THE VERY LEAST AS A PRESENT FOR MY UPCOMING BDAY!! THIS IS THE GREATEST MEDICAL SCANDAL OF OUR TIMES!!! THE WORLD NEEDS TO KNOW THIS!!! ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

Antidepressants or counselling cannot and never will replace exercise, long walks in nature, fulfilment of work, participation in life. It also cannot ameliorate such horrific physical symptoms. Stop telling me to treat my depression. The only treatment I require is for #MECFS ❗️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

Imagine this: 80% of all cancer patients:this treatment is making our cancer worse.We are dying Psychiatrists in charge of cancer care: it’s your fault. You’re not trying hard enough. How dare you question this, you abusive activists This has been happening to pwME for decades

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

11 months

yourself into some bullshit “healing state” with meditation, belief +mindset. And no, contrary to what mind-body grifters tell you, you can’t turn on 100 genes with your mind & cure the most complicated disease on earth just like you cannot walk through fucking walls. Ciao! 🖕🏻

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 years

THE BIGGEST TRAGEDY OF ME/CFS IS THAT IT’S LIKELY CURABLE EXCEPT NO ONE HAS GIVEN A TOSS ABOUT IT FOR SO LONG THAT WE ARE DECADES BEHIND IN FUNDING AND RESEARCH!!! THE EXTREME SUFFERING OF MILLIONS IS COMPLETELY & UTTERLY UNNECESSARY & COULD HAVE BEEN PREVENTED #MillionsMissing

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

I fucking can’t with the long covid deniers… It’s like denying cancer. How can people be that fucked in the head??!!! I’m getting myself mad and losing precious energy. It’s like talking to fucking amoebas. I need the fortitude to disengage. Usually I manage but recently I can’t

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

Once again so even single cell pond life can hear: THERE IS NOT ONE SINGLE EFFECTIVE TREATMENT FOR #LongCovid & #MEcfs !!! Those of us with ME/CFS have been at this for DECADES! Get it into your heads: conventional OR alternative, NONE OF IT FUCKING WORKS! We NEED URGENT research

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

9 months

41 today. 7th birthday having lost everything to #MEcfs . 3rd bday with #VaccineInjuries . Nothing I do makes a dent. I never improve. If you want to buy me a whiskey, I’m fundraising for Ron’s lab specifically to help them move forward the most promising hypothesis for immune ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

It doesn’t matter how smart, educated, fit, hard-working, dedicated and disciplined you are… When you get MECFS, your life is worse than over and there is literally nothing you can do about it. A prospect I never thought possible, until it happened to me #meawarenesshour

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

I’m tired of reading what #mecfs & #LongCovid might be. It helps my suffering exactly 0%. We should be zeroing in by now. I want to hear what it is, immediately followed by treatment options we can immediately try. It’s been too long. 40 years too long. For me, 6 years too long

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

11 months

People who take some nattokinase, aspirin, niacin etc, do some juicing, fasting, whatever and suddenly declare improvement, post videos of them walking/exercising again and tell the rest of us to have hope…. 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️ They do not have the same disease as me. Not even 1% the same

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

People who are lucky to get spontaneously or through treatment better from LC, ME or vax injury are often seen as “inspirational”. Do we treat people who win the lottery as inspirational too? My pathology doesn’t respond to any treatments I’ve tried. It’s not a character failing

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 years

3. You know how sick you are right now. You know that you relapse every time you try to do a bit more. Can you see how graded exercise has made many M.E. patients permanently disabled? It may do the same to you. The virus has affected your energy metabolism.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

6 months

Never a truer word been spoken. Since having #MECFS , I have entirely lost faith in the medical profession. When I walk into a doctor’s office, I have ZERO hope they will help me, as I already know I have INFINITELY more knowledge than they do and I don’t know how to treat this.

Başar SARIKAYA

@basarsarikayamd

6 months

It’s disheartening to see that many ME/postviral disease sufferers are better equipped than their treating physicians. In my nearly 30-year medical career (med school included), I’ve never encountered such a situation.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

I have nothing to inspire people with. No one sends me rivers of congratulations for achieving or overcoming something. I haven’t “beaten” a disease, because not all diseases can be beaten ESPECIALLY when there isn’t a single treatment. ⬇️

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

3 years

@campbellclaret @pritipatel Bigger question… How in the world the majority of this country voted for the Tory party? They essentially put people like her in charge! How could anyone vote for someone (Boris) who openly claimed inequality is desirable!?

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

1 year

We need more media stories of people who are NOT improving from #LongCovid or #vaccineinjuries . Showing improvements leaves the rest of us for dead because why help us, we’ll get better in time. No we won’t. Many of us will never get better without a medical breakthrough #MECFS

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 years

Im in tears at seeing so much incredible coverage of M.E in major news outlets.The first time since Ive been sick,I feel seen &validated.I feel like someone cares.For the first time ever,I feel like the world is waking up to the horror of this disease @TimesONeill @PaulGarnerWoof

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

2 years

I was pro vax. I had the vax. Now my legs are damaged. Over six months and zero improvement. No help. No answers. No hope. Plentiful censorship instead. Eyes opened. Trust destroyed forever. #vaccine #coronavirus #Pfizer #COVID19

Miss Info

@WellandArt

2 years

I was pro vax. Then I was, I'll just wait for a bit. Then I was, something is not right here. Then I was, I am not having the vax. Then I was, I am not having any vax, ever. Now, I am not letting the NHS near me without thorough research. They did this, not me.

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Agy Lena 🏳️‍🌈🇵🇱🇬🇧

@agy_lena

4 years

4. Trying to exercise out of it is like trying to run on a broken leg. We have the @KingsCollegeLon psych lobby to thank for these disabling “treatments” and the total void in research funding and why we now have ZERO to offer you to get your lives back.

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