Stephen MIA @Silas33 Twitter profile | Pikagi

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Stephen MIA

@Silas33

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3,400

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Former Skier, Cyclist, Climber, Hill Walker, Diagnostic Radiographer and functioning human. Now - ME, POTS, LC, Vax Injury - Pro Vax - Still finding the joy

United Kingdom

Joined April 2009

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@Silas33

Stephen MIA

2 years

1/ Medicine has no idea what ME/CFS or Long Covid is. It’s listening to your wife sobbing in another room trying not to let you hear because she doesn’t want to make you feel worse. It’s your son pretending it’s ok that you don’t do anything with him anymore.

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@Silas33

Stephen MIA

6 months

I left negative feedback on eBay for the first time yesterday , I thought it as reasonable. Just check out the reply!

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@Silas33

Stephen MIA

6 months

@MaeExhausted Yes reported

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@Silas33

Stephen MIA

1 year

@JeremyVineOn5 This is pretty disgusting - I was clapped during the pandemic for my role in the NHS and now I’m too sick to work I’m treated like scum.

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@Silas33

Stephen MIA

2 years

3/ It’s being dismissed, disbelieved and vilified just because it’s not understood. It’s living in constant pain with no end in sight. It’s like dying and yet seeing life carry on as if you never existed. It IS worse than most people can image

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@Silas33

Stephen MIA

2 years

2/ It’s your parents sad eyes trying to help but not knowing what to do. 2/ It’s your friends backing away in bemusement, no longer phoning because they don’t know what to say anymore. It’s the slow sinking into obscurity, no longer feeling like the person you once were.

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@Silas33

Stephen MIA

2 years

Me: Is it normal that my GP has no understanding of the disease I have been diagnosed with. GP: Well we can’t be expected to know everything, we leave that to specialists Me: ok great , who can you refer me to GP: oh we don’t have anyone for your condition. 1/2

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@Silas33

Stephen MIA

2 years

I’ve gone from a very fit happy and optimistic person working full time in a job I loved to entirely housebound. I can’t even do simple things like go for a walk, go for a meal with my wife or play with my son. What had the medical system done? 1/6

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@Silas33

Stephen MIA

2 years

Officially lost my job today. Occupatioal Health are assessing if I am eligible for retirement due to ill health in a few weeks - any NHS workers with any advice would be very welcome.

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@Silas33

Stephen MIA

1 year

If you think people pretend to have a chronic illness for attention, here’s some news for you - I’ve never been more ignored or got less attention in my whole life!

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@Silas33

Stephen MIA

1 year

Just a periodic reminder that I got ME/CFS and POTS from my vaccination. I’m pro-vax and not a right wing loon. We do exist and it’s ok to say so - I also think the trolls who think everyone is vaccine injured are annoying and wrong 😊

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@Silas33

Stephen MIA

2 years

A reaction tho the Covid vaccine gave me ME/CFS and POTS - I’ve had to give up work and am housebound. I get 2 reactions: Pro Vax: I don’t believe you - you must have had Covid Anti Vax: You are an idiot for taking it I think people actually forget I’m a person!

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@Silas33

Stephen MIA

3 years

This stupid disease has taken so much from me. My job, my social life, exercise, spontaneity, fun, my future. I will fight to my dying breath to get it back but sometimes it just feels impossible.,, #pwME

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@Silas33

Stephen MIA

1 year

What is it about the medical system that engenders so much animosity towards chronic illness. On my journey here it has struck me that we aren’t just neglected we are actually despised even demonised by some. Why is that?

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@Silas33

Stephen MIA

2 years

1/ It’s really hard to put into words what it’s like to be Vaccine Injured. Obviously the Vaccine has helped millions of people and saved the lives of many and I am grateful for that. The problem is it has stolen my life away from me. When I talk about it strangers abuse me.

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@Silas33

Stephen MIA

6 months

@DavidLiberty311 I’ll send all your packages 15 miles away from you from now on.

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@Silas33

Stephen MIA

1 year

Time for a bit of naming and shaming I think. Professor Julia Newton - Prescribed me “exercise” - Told me microclots were a “scam” - Told my pension company I’ll get better - Told my GP I’m fully recovered because I refused to see her anymore.

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@Silas33

Stephen MIA

2 years

If you have ever wondered how ME/CFS became so stigmatised and misunderstood just watch what is happening to Long Covid. The exact same process is being played out in real time.

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@Silas33

Stephen MIA

2 years

My PPSS clinic has assigned me a Living Well Coach for an unfathomable reason. He told me it’s good to talk through my feelings. I have now subjected him to 2 hrs on the history of ME abuse and why CBT, GET the BPS lobby and his colleagues are wrong. I actually do feel better 😁

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@Silas33

Stephen MIA

2 years

Those of you amazing people that have suffered with ME/CFS for years - what one piece of advice would you give to newer members of the ME/Long Covid community?

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@Silas33

Stephen MIA

2 years

As I see it, the main reason that ME/CFS and Long Covid are so neglected is that nobody has ownership of our issues. Most specialities such as Neurology or Rheumatology have done their best to distance themselves from us. How can we progress without someone being responsible?

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@Silas33

Stephen MIA

3 years

Why do I feel guilty for being ill. I know I shouldn’t but I feel like I’m constantly letting people down by not getting better. I desperately want to answer the inevitable “how are you doing“ text with something positive. The problem is I’m not, far from it in fact.

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@Silas33

Stephen MIA

2 years

ME: ok, can I send you the new NICE guidelines then. GP: I’m too busy, I don’t have the time you do to research this stuff. This is my 3rd GP, the first two among other highlights recommended I “take some nice walks “ and “concentrate on your body less” 2/2

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@Silas33

Stephen MIA

10 months

I’m pro- vax, it saved millions of lives, it great etc. Mine however ruined my life. It’s a strange feeling seeing the person who invented it being fated and given humanities greatest prizes. A difficult thing for most of you to understand I suppose - it’s definitely complicated

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Stephen MIA

1 year

So far from the Berlin conference I have learned that: Vaccines can cause ME/CFS, its just another Adjuvant like a virus Covid is causing ME/CFS at unprecedented rates ME/CFS - Long Covid is an autoimmune disease - I must say it has been very validating

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@Silas33

Stephen MIA

1 year

I got ME/POTS after my vax. When I talk about it I lose followers, get abuse, DM’s and blocked. Can I ask honestly what you think - Should I stay quiet to avoid hesitancy? Do you think I’m lying? Or do you think I’m mistakenly attributing LC to the vac? Genuine Question.

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Stephen MIA

2 years

I have ME/CFS and PoTS my symptoms are clinically indistinguishable from Long Covid. I haven’t been diagnosed with Long Covid because my illness was triggered by my 2nd Covid Vaccination. I’m largely in favour of vaccines and have always urged people to have them - 1/6

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@Silas33

Stephen MIA

2 years

happened to me. I have personally spent around £15 000 on treatments which have helped but not cured me. The truly sad part of this is that I am not unique. This is played out every day all over the world. I am just one of the #millionsmissing #pwME #vaccineinjuries #LongCovid

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@Silas33

Stephen MIA

6 months

@Jairus_Girl Yes and yes!

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@Silas33

Stephen MIA

9 months

The only people talking about “fatigue” are people that don’t have ME/LC. It’s a kind of shorthand way to explain how we feel. It’s nothing like fatigue though - not similar at all. It’s more like a total absence of the required physiology - not worn out but just not capable.

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@Silas33

Stephen MIA

2 years

ME/CFS clinics should be championing the patients. They should be pushing for treatments, referring to specialists, testing for PoTS, MCAS, SFN. Exploring links with other similar conditions, helping us access financial help and supporting us with access to disability aids. 1/2

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@Silas33

Stephen MIA

3 years

Not a recovery story but I have gone from bedbound to housebound in the last 2 weeks. Was driven to a local viewpoint this morning. I managed to do an impression of a normal person for 10 minutes. My HR was 160 but it was still awesome 🙏

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@Silas33

Stephen MIA

2 years

has come from social media. Not one person in the medical system has understood my conditions and all knew either nothing or harboured outdated views about it being a psychological disease. I can categorically say that not one medical person cares that this has 4/6

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Stephen MIA

2 years

I sometimes feel that I must be the only person who has been diagnosed with ME/CFS in the last 2 years. I lost a job I would still have if I had Long Covid and I have struggled to get recognition in a world that understands Long Covid but still thinks ME is “just fatigue “. 1/4

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@Silas33

Stephen MIA

6 months

Do people really think I can’t tell the difference between “deconditioning” and a life altering disability that has smashed my life to pieces? It’s so ridiculous that it would be funny if it wasn’t so tragic! #pwME #pwLC #postVax #POTS

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@Silas33

Stephen MIA

7 months

Can I just say this loudly: “The way to reduce patients with chronic illness from rising and burdening the welfare system is not by prescribing more CBT. It is by recognising and researching the underlying biological mechanisms that got us here” Thank you.

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@Silas33

Stephen MIA

10 months

If you have ME/CFS, it is likely that you will never get better. It is possible to improve but it is also possible to get worse. Pretending we will get better is just another way of dismissing our symptoms. Until Medicine or the Public recognise this we won’t be taken seriously.

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Stephen MIA

1 year

I have a disease that most of medicine doesn’t believe is real which was caused by a mechanism which is officially denied and causes people to hate me when I tell them. It would seem too far fetched if you put it in a film!

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@Silas33

Stephen MIA

7 months

@ITV @Suej1959 ME/CFS has been called the biggest medical scandal of the 20th century. Children forced from their families and subjected to exercise - deliberate cover ups and mistreatment. Countless suicides and deaths which were all avoidable. It’s well documented and is still an issue.

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@Silas33

Stephen MIA

6 months

@DavidLiberty311 And you aren’t my “buddy”

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Stephen MIA

2 years

Honestly at this point if you think that #LongCovid or #MECFS is a psychological disease you are being will-fully ignorant. The question now is WHY? Is it reputation, financial incentives, misguided beliefs or a combination of these. I’m genuinely perplexed by it!

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Stephen MIA

1 year

A lot of people are messaging me to ask me not to share negative articles about ME/LC. I appreciate why people are saying this but keeping quiet hasn’t achieved anything. Would we be expected to keep quiet about an article insisting cancer was psychological? I speak up.

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@Silas33

Stephen MIA

2 years

Well a year ago they took a blood test which came back “normal”. Since then the advice has been : 1) Go for a nice walk 2) Stop concentrating on your body. 3) You are deconditioned 4) You will return to normal soon, you don’t need to make any more appointments. 2/6

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@Silas33

Stephen MIA

7 months

Medicine isn't going to fix LC/ME/POTS anytime soon. Effective treatments or even an understanding of the exact processes are at least a decade away. What medicine CAN do is start taking us seriously. A change in attitude would be transformative and IS within their grasp.

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@Silas33

Stephen MIA

2 years

No 3 done. 3.5 Litres today. Tired after the procedure but otherwise ok. Brain fog still definitely improved, I’ll know better tomorrow if my energy levels are better. Ext one Friday, all positive so far but a way to go yet.

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@Silas33

Stephen MIA

1 year

Hands up if the biggest thing you have learned from chronic illness is how corrupt, self serving and harmful medicine can be.

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Stephen MIA

7 months

After claims that ‘resilience’ will cure Long Covid, it’s worth pointing out that living with a life changing condition is probably the most resilient thing you could do. People outside of the LC/ME community have no idea how resilient we are.

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@Silas33

Stephen MIA

7 months

Just so I’m clear - the reason why millions of ME/LC sufferers don’t get effective medical treatments is because a small group of Psychiatrists think: The 4 year review by NICE is wrong 10’s of thousands of peer reviewed evidence is wrong Millions of patients are wrong

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@Silas33

Stephen MIA

6 months

@DavidLiberty311 You’re not even a good troll.

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@Silas33

Stephen MIA

6 months

@cfs_jo I was was pretty shocked - it’s just not ok is it!

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@Silas33

Stephen MIA

2 years

5) I don’t have time to learn about your condition. Because I work in the NHS I managed to see a Cardiologist who confirmed my suspicion of PoTS and ME. He then told me I was deconditioned and will return to normal soon! Everything I have learned about my condition 3/6

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@Silas33

Stephen MIA

10 months

“You’re not welcome in Long Covid circles because you never had Covid” You’re not welcome in ME circles because Vaccine stuff will tarnish out already difficult image” You aren’t welcome in vax injury circles because you still support vaccines” Not sure where I fit anymore.

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Stephen MIA

6 months

In 3 years I haven’t found one single POTS medication or lifestyle adjustment that works at all. In 3 years I haven’t found one single ME medication or lifestyle adjustment that works at all. And I’ve tried a lot of stuff - I can’t be the only one can I?

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Stephen MIA

1 year

The overwhelming majority of people with ME/CFS and many with Long Covid will not get better. This is statistically the case, look at the SARS 1 patients. It’s right we should be looking for cures and staying hopeful but I think it’s important that we understand our situation.

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@Silas33

Stephen MIA

9 months

We all have one, and I’m betting you will know exactly which one it is. My last photo before I got ill. I almost can’t remember who that guy is.

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Stephen MIA

1 year

Mitochondrial Dysfunction and Herpesviruses in ME/CFS Bhupesh Prusty: Its about marrying Mito dysfunction, Herpes And autoimmunity What is happening with Herpesviruses, where are they? Specific proteins are frequently found in ME/CFS which is correlated with severe patients

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Stephen MIA

1 year

If you have mild ME/CFS or Long Covid then and you are lucky enough to be given a platform then PLEASE could you mention the fact that a huge cohort of us are so sick that we are bedbound or housebound. You really aren’t doing us any favours if you don’t.

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Stephen MIA

3 years

Once we get rid of CBT and GET can we concentrate on finding a cure please. These distractions have gone on long enough. Medicine has allowed the prejudice and ego of a few individuals to dominate the lives of millions - @NICEComms just Publish those Guidelines #pwME #pwLC

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Stephen MIA

10 months

Low seratonin levels in pwLC will be the study that breaks into mainstream medicine. Not because it’s the most revealing but because it will be the easiest to dismiss. Diet, Exercise and handful of SSRI’s and close the door on your way out!

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@Silas33

Stephen MIA

2 years

Despite already being mostly bedbound I’ve somehow managed to get worse after a virus. I’m now in constant pain and struggle with media most of the time. Not looking for sympathy as most of you know these struggles but I won’t be on here so much anymore. Keep up the good fight.

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@Silas33

Stephen MIA

2 years

Landed home from Germany at the weekend. Have been feeling awful ever since. Just tested positive for Covid - wish me luck!

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Stephen MIA

11 months

So a biomarker with 91% accuracy, 2 day CPET, Cerebral hypo-perfusion, pre load failure, measurable co-morbidities, abnormal proteins in muscles etc. etc - can someone tell me why we are still being Psychologised by medicine?

@TomKindlon

Tom Kindlon

11 months

New from @OxMEDiscovery group: Developing a Blood Cell-Based Diagnostic Test for #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Using Peripheral Blood Mononuclear Cells Free Funding from @MEAssociation ; samples from @mecfsbiobank #PwME #MEcfs #CFS 1/

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Stephen MIA

2 years

What is going on with Neurology? Actual footage from a conference recently! Long Covid = Functional Vaccine Injury = Functional ME/CFS = Functional POTS = Functional Let’s sacrifice another patient to the god of functional medicine!!

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@Silas33

Stephen MIA

2 years

the vaccine can’t cause it. I can be referred to psychology though apparently as I seem to be having a tough time. I think I have now officially had enough of the medical system. One of these days I will tweet something positive just not today it seems.

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@Silas33

Stephen MIA

1 year

Getting ME/LC is like joining a secret club. Only we get to understand how profoundly disabled people can become so easily. The catch is once you are in the club other people outside the club stop believing you.

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@Silas33

Stephen MIA

6 months

@maryeilmicdom I honestly can’t recommend!

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Stephen MIA

2 years

HELP Apheresis update. The team here are awesome, really helpful and friendly. The Dr prescribed me the triple anticoagulants before the procedure. The treatment was easy but did make me crash afterwards. I bounced back quickly which is unusual for me. Next one Friday 🤞

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Stephen MIA

1 year

I live in one of the most beautiful places in the world - it’s unbelievably frustrating not being able to be out there. Maybe one day.

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Stephen MIA

10 months

With a new study showing significant Neuro-Inflammation in Long Covid then the only question now is what is the cause? This is significant I do hope all the Neuro/Psych activists such as Wessley, Sharpe, Garner, Carson, et al are reposting this study with a long apology!

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Stephen MIA

1 year

Some people are saying they don’t care about a biomarker and they are only interested in a cure. Let me explain - people who don’t have ME and then somehow miraculously recover using CBT, GET, eating Platypuses knees etc have done more harm to our cause than any other group.

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Stephen MIA

6 months

Seeing all the awful stuff on here following Lauren’s death from some accounts has been very revealing of people’s attitudes to ME/CFS. What’s clear is is that the “Chronic Fatigue” label really has worked to minimise our suffering in exactly the way it was supposed to.

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Stephen MIA

1 year

Just in case anyone thinks you can’t say this because you will be bullied - I think at least half of Long Covid cases are clinically indistinguishable from ME/CFS. That’s not controversial or an attack on anyone. Objectively is important - I stand in support of all pwME/LC 😊

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Stephen MIA

2 years

Sooo had another conversation with my GP today. When I last spoke to her we discussed getting tested for SFN and MCAS. The Neurologist and Immunologist have written back. MCAS is apparently controversial and there is no clear evidence that it exists and I can’t have SFN because

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Stephen MIA

6 months

Before I got ME/CFS I had no idea how serious it was. Did I think it might be psychological, possibly. I understand why people are confused, but I can tell you with certainty that I would not have spent my precious time on twitter trolling sick patients.

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Stephen MIA

1 year

ME awareness day always forces me to confront just how much I have lost. Seeing how many other people have suffered this same loss is just devastating. I am however proud to stand amongst some of the bravest, strongest and most resilient people there are. #MEAwarenessDay

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Stephen MIA

10 months

“Approximately 25% of people infected with SARS-CoV-1 developed debilitating fatigue and other symptoms that met diagnostic criteria for myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) that continued for more than four years”

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GPs need awareness about post-covid ME/CFS

Wise reports that general practitioners might be under-reporting long covid in patient records.1 Approximately 25% of people infected with SARS-CoV-1 developed debilitating fatigue and other symptoms...

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Stephen MIA

2 years

6/ like the modern equivalent of a leper. I won’t hide away though - I’m real. I don’t want to spread hesitancy but I will continue to talk about it because I know what it’s like to be on this position. If my voice helps someone in this position in any way then it’s worth it.

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Stephen MIA

11 months

The palatable media version of Long Covid or ME consists of mild patients and an unrealistically sunny outlook. People don’t want to hear the reality but rather a shiny “it’ll all be ok” version of the truth. Throw in someone battling through but winning and bingo!

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Stephen MIA

3 years

Just had a call from one of my colleagues at the hospital this morning. Her husband has developed suspected PoTS and is struggling with no energy since his booster. She didn’t know where to turn and needed advice because A&E and their GP were clueless! The system is broken 😞

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Stephen MIA

10 months

1/ I have been diagnosed with ME/CFS twice in the last 3 years. The second time was by a specialist who asked me about PEM, symptoms, history etc - very thorough. The first time I was diagnosed nobody even told me that it had happened. I was diagnosed by my GP who also happened

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Stephen MIA

9 months

In order to mentally feel more at ease with this state I need to let go of my old self. That means letting go of who I was in lots of fundamental ways. Sort of like I’m required to give up part of myself because holding on to it is too painful. You guys will understand it.

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Stephen MIA

10 months

Does the fact that a small percentage of us recover mean that we are all capable of recovery? Medicine seems to assume this and we are regularly told recovery is possible. I personally think I’m not getting better until a breakthrough is made but is this a prevalent view?

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Stephen MIA

7 months

Every single study that shows pathology and dysfunction is another nail in the coffin of the psychological model. One day medicine will catch up with what the patients already know.

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Muscle abnormalities worsen after post-exertional malaise in long COVID

Nature Communications - In this longitudinal, case-controlled, cohort design study, authors show that post-exertional malaise is associated with severe exercise-induced myopathy, local and systemic...

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Stephen MIA

1 year

Disappointing journalism, this is an opinion piece based on the story of two very flawed clinicians. The smallest amount of actual journalism would have shown you that Trudie Chalder and @PaulGarnerWoof are not credible. Lazy at best and harmful at worst @rachela_hall

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Stephen MIA

6 months

Is there anything worse than trying to explain your medical reality to someone who doesn’t believe you? Besides the actual pathology this kind of dismissive attitude comes a very close second.

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Stephen MIA

2 years

3) Pretending we don’t exist and minimising us is exactly what the whole ME/CFS and Long Covid community have rightly fought against for years/decades. To apply these same tactics against the injured because we are inconvenient is a little ironic. 4) Science and medicine 5/6

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Stephen MIA

1 year

People actually just think we are tired don’t they. I’ve given up my whole life because I feel a bit tired!

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Stephen MIA

2 years

My lovely sister.

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Stephen MIA

2 years

2/ I’m accused of lying for some perceived financial gain or trying to forward some kind of anti-vax agenda. I’m forced to explain that I support vaccines and understand that they have done more good than harm. I understand the motive and why people think I’m some sort of

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Stephen MIA

2 years

They should be keeping up to date with latest research, even running trials on safe treatments. Instead we are disbelieved and gaslighted into treatments that are proven to be either ineffective or harmful. We know it and they know it. We need meaningful change now. 2/2

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Stephen MIA

6 months

If you think mentioning ME/CFS at a meeting for funding of Long Covid is a problem then please unfollow me. If you want me to explain that further I’ll happily oblige.

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Stephen MIA

1 year

Don’t get me wrong, being chronically ill and not having a partner would be worse but I really struggle with the guilt I have for holding mine back.

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Stephen MIA

1 year

Alan Carson believes that much of Long Covid and ME/CFS is a psychological phenomenon. He is one of the leading proponents of the FND model and is involved in Long Covid research. How is it possible that this is acceptable?

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Stephen MIA

10 months

If you think being described as Post Viral is insulting and not descriptive enough for your condition, try being Vaccine Injured. I have the same symptoms as you We are literally the key to this - pretending we don’t exist just doesn’t make for good medical science.

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Stephen MIA

9 months

I hope that every single person who has symptoms the same or similar to me lives to see us get better. I don’t care how it is done or who’s theory was ‘most right’ In the meantime, I wish you well and I’m sorry this is happening to you because I understand how difficult it is.

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@Silas33

Stephen MIA

1 year

Endothelial dysfunction is found in both ME/CFS and Long Covid patients - the mechanism is not fully understood but is likely to be autoimmune in origin.

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@Silas33

Stephen MIA

2 years

Feeling grateful - Over the worst of my Covid adventure. Highlights include feeling like I was going to die and talking to someone who wasn’t there! Thanks for the lovely messages - feel almost like a normal human being in the sun today.

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@Silas33

Stephen MIA

2 years

I was musing today on why Kings College and Edinburgh seem to have endless funding for BPS campaigners and FND research. I dug a little into how Universities are funded and found that endowments are the bulk of their funding. Oxford and Cambridge have the most which can be 1/5

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@Silas33

Stephen MIA

2 years

2nd one in the bag. I’ve settled on 2 a week which seems to be manageable for me. Feel better after this one than the first one. Still early days, the team here are lovely.

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Stephen MIA

2 years

I used to be very fit. My alcohol intake was very low and I ate healthily. Since all this happened I have developed non-alcoholic fatty liver. My ALT just keeps going up. Has anyone else had the same? #ME /CFS #LongCovid #vaccineinjuries

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