Paul Keeble ME/LC
@PaulRKeeble
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ME since 2017 (Mild), 2019 Moderate , 2020 Severe Long Covid since March 2020 (V Severe) Funcap55 = 1.9 ( (Severe) previously 2.13, 2.4)
UK
Joined March 2009
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At school I remember a kid who never got sick, received an award for their 100% attendance. They weren't the top performer and the people who sat near them were sick more often . Looking back I realise this person was a super spreader every winter.
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I just did some crude math after looking up likely hospital capacity in Beijing and assumed time of spread based on what China has said. I made the doubling rate 6 days.
Its in two cities spread by 800KM.
This will be a pandemic. Its highly likely in the worldwide already.
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@useless_priest
I suspect a lot of cancers will come down to viral infections of all these mild viruses like rhinovirus. We are going to find a lot of chronic issues stem from them as well.
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Giving awards for attendance is the opposite of what we should reward. Being sick isn't a choice, we should be rewarding effort and attainment not genetics. Especially when those who are never sick are often the ones spreading disease. Kids coming in sick harms everyone else.
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@StandingHannah
Just like how we are all on the same ocean when a storm hits usually said in regards to economic downturns. Only a few of us start out in yachts, many others in life boats and yet others are already in the water drowning.
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This is what Long Covid looks like. The dark eye sockets are a dead give away but his skin has also degraded too. The inability to balance properly is another obvious symptom.
The dark circles around the eyes. The swaying back & forth while standing. The nervousness. Something seems really off.
Anyway, I’m just glad Prince Harry, & esp. Meghan & their kids escaped the sunken place.🥂
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@DissentFu
Japanese viewers at the olympics and various sport events are well known for cleaning up after themselves and others. Littering is a deeply antisocial thing to do but its really common in the UK and its why its filthy.
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The more medical papers on Covid and Long Covid you read the more out of touch with other people you become.
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People who don't believe 10% of people have
#longcovid
must be imagining that all these bed bound people would be out on the streets in their beds.
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@AlanBixter
It takes 20+ years for research findings to make it into medical practice and the reason is doctors don't read the seminal medical papers of our time. So we have to wait for it to make it into medical textbooks and those people to become consultants. This has to change.
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@iseeuliars
I wouldn't be surprised if it was to cover up for the fact they might somehow of missed something and actually be at fault. I have seen this behaviour a lot when they have been negligent.
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@alexandrite113
We have had at least 3 big studies on the topic covering over 50,000 people showing subsequent infections result in worsening condition. Its a scientific fact.
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@LindseyMarie_xo
What happened is you just got gaslit by a doctor that believes POTS is a tiktok social media hysteria rather than one of the most common outcomes of Long Covid. Odds are that doctor holds some awful views on Long Covid generally, that one is broken you need a different one.
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@oldenoughtosay
Rather than snark it ought to be a referral to the professional body for standards. These lazy good for nothing doctors ought to be defending their right to practice. Medicine gets cleaned up really quick if the good ones take some action.
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A doctor asks how your social life is. This is a really obvious mental health trap. The answer is always vibrant and fulfilling. Recall an event with an ex-deep friend but make it recent, it will be more authentic and contain detail. Fail and it's an anxiety diagnosis.
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@behade20
The power of defaults and peer pressure in effect. Most not masking that is the pressure direction, most masking however and that sets the acceptable behaviour. Its why its so important for doctors/receptionists/nurses to mask.
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After a few years of being chronically ill all your friends and family will have left. Never tell a doctor about this, make up friends/family and events if needed. Society abandonment is seen as a social signal of a malingerer.
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The COVID pandemic has really exposed a few fundamental flaws of humanity that I failed to see the extent of before
- People lie often and believe lies easily.
- Almost no one does the hard work to learn properly.
- The combination is how the wealthy control the world.
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@DeMercy_
You just know they are getting the very best in diagnosis and experimental treatment options rather than the gaslighting abusive sessions the rest of us get. Even then they are not coming back and still they wont speak against their own policies that stop research being done.
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@JulieTheCranky
The world would be a better place if those 5 were referred to the general medical council or whatever body oversees standards in your country and has the ability to remove their ability to practice.
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@DecorumManager
The Kyoto agreement, the one thing that could have changed the world trajectory. Alas the USA collapsed the deal, some countries went ahead and are nearly done now with their transitions in the EU, shows the world we could have had.
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👀 80% of healthy controls aren't healthy. This is the second time in a day a researcher has said this. Very concerning.
@AzolaAlba
David Putrino has mentioned this. I would actually really love for the data on it to be published somehow. I feel like it’s a really extraordinary indicator of how under-detected Long Covid is.
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My chief concern now with the
#maeveinquest
is since no issues were found in her care this leaves little room for future prevention of deaths order. The coroner found no concerns with any of Maeve's care so there is no justification for change. This is a devastating outcome.
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@broadwaybabyto
The fact they do spread the virus so openly in public spaces is precisely why the vulnerable have been expelled from them all year round. Getting people to realise the consequences for others and care about is a monumental challenge which I think will continue to fail.
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@catladyactivist
Its the only way that actually works. If you aren't textbook patient presenting with a textbook version of the condition odds are you'll end up with a psychosomatic diagnosis.
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@CactusAndy
It's not the people in masks they should fear, it's all the people they can literally hear coughing throughout the plane who aren't wearing masks. If you don't want to get sick, and you really shouldn't, then wear a mask!
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@mercurial_moons
They never explained in history lessons about the holocaust, how popular these actions were and how many people were involved nor the techniques used to convince people. As such modern society is just as vulnerable as the 1930s people were.
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@86thistimeline
A lot of this nonsense is coming from Doctors. People take their children for a diagnosis, get told its just anxiety and they come back and tell everyone its not Covid related. Doctors are a big part of the misinformation problem and why people don't know what happened to them.
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Christmas morning? This should have gone out a month ago and been repeated a lot. You have done everything you could to bury this message. The deaths caused by this are criminally negligent.
Spread the love this winter…not your germs 🦠
If you’re not feeling well, protect others by staying at home & avoiding close contact with others if you can.
😷🤒🤮
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If you are ever asked in healthcare how much something hurts out of 10 the correct answer is 6. Anything below and its not worth treating and anything above and they don't believe you and wont treat it.
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I will be very happy if I am wrong, and unlike someone responsible for this I can say this and be wrong and not ruin a career. But this already looks like its out of control and fast to spread.
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This just keeps happening. More abusive dismissing comments every time doctors talk about chronic illnesses. This time its
#Pots
.
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My gut test came back. I do have Candia but more pressing is an Amoeba infection! Full on notifiable disease, my GP refused to do a gut test multiple times for parasites so that will go well in an inquiry! IgA also very bad now. So nice to get a test with issues!
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Imagine a doctor who refuses to believe in Cancer. They wont refer patients for cancer treatment, have policy documents that have the treatment as sunshine and being out in nature. Do you think that doctor might be dangerous, should be removed from the NHS?
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@1goodtern
The weirdest part is whether the partner lives or dies they just carry on taking no precautions as if the traumatic event never happened. Its some of the most bizarre irrational behaviour I have seen and its universal.
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@DcrInYYC
I am expecting most people wont seem to notice that half of everyone is dead. They will just be moaning that things are always delayed and places are shut due to a lack of staff.
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@audisdead
I used to see about 5% who were just genuinely unpleasant to a lot of people. But the amount that pass the threshold now for at least going along with the bad people is staggering.
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1 in 4 are turning up to the doctor showing signs of Long Covid and getting a Medically unexplained symptoms or FND tag instead of Long Covid because its anything but Covid in the NHS.
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The UK government needs to urgently move to contain strategy and announce children with the symptoms not attend schools. We must this time pursue suppression and containment and be early with measures to stop this.
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The one positive out of todays ruling is that a Coroner and all at a Hospital trust have said ME is a biological disease that can result in loosing the ability to eat and can kill you. The disease can be fatal.
This makes it harder for psychology view to persist.
#maeveinquest
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@makeupartist524
Its impressive they have realised that maybe the information they are getting from the healthcare system and its professional public bodies is probably nonsense and they have turned to social media to check. Takes a lot of awareness to break out of the propaganda.
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It's disturbing how often this correlation is applied in the wrong direction to blame the sufferers abandoned for their health rather than to admit society abandons its ill.
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@catladyactivist
My medical record may as well be someone else's for the level of inaccurate nonsense in it.
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Reality of ME/CFS in UK NHS
1 We can't get diagnosed
2 We get no symptom relief treatment
3 We are not tested for other conditions nor treated for them
4 We lose healthcare the moment we have ME symptoms.
5 We are left to die.
Our human right to life is being violated daily.
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@SalvMattera
This whole debate is like the "debate" around climate. There is no debate all the science points one way. All the opposition is using anecdotes and falsehoods. Just like climate change the media is only showing the unscientific side.
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We have often wondered if the rapid antigen tests didn't work very well on the latest variant. Turns out 90% of asymptomatic cases are missed by RAT.
#covid
#CovidIsntOver
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@1goodtern
It doesn't seem like anyone in power actually cares if 40% of the populace dies now. Its just not a concern for them. Most of the populace thinks they will be in the 60% so they too are just fine with letting it run.
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@verygoodchat
"Its critical the children are in school"
Yes but its also critical there are teachers and that the children still have a functioning body and brain to be able to attend school. Mere presence in the seat is not enough for education.
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@Nova_Thistle
They used to have all those amazing defences where all the off screen staff were masked to avoid spread. One of the problems of not talking about it is that everyone thinks its gone away and its not a big deal and so by staying silent he has endangered himself and everyone else.
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@makeupartist524
People really have bought the lie that COVID is over and have no idea what is happening to them.
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@ChrisAlvino
Doctors don't read papers. The audience for them is other researchers and us. We the patients read more papers than the researchers do because they are busy doing research. When they say we are the experts its not just in our experience, its literally true on the medicine too.
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Child is dying in hospital after loosing the ability to eat. Consultants and carer have no clue what is happening. 3 months after their 5th Covid infection. 😢
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@kananaskinyeti
You give them a nice peer reviewed summary paper with pretty pictures and articles written in mainstream media and they still gesture that everyone would be worried if this were the case. There is no talking people out of a position they clearly haven't reasoned themselves into
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Chronic low oxygen found in Gulf War illness by tracking hydrogen atoms flowing through the brain using an MRI to track blood flow over a minute. 20 men compared to veteran control. 50 mL/100g/min is normal, GW had 37.6 mL/100g/min. They were laying down.
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@1goodtern
Quite a few people were forced to take a trip toe the beech instead of working. The horror of it, just looks at this imprisonment.
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@ibrake4ants
@1goodtern
Hearing so directly from someone they don't care if you die due to their actions, especially from those employed to try and keep you alive, is really quite harmful. It's definitely a breach of their ethical guidance.
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Dr Strain "Patients with ME don't do well when they get Covid.". Seen many patients with mild ME (still life changing) they then suffer very badly with Long Covid. Seen several deaths, all ME should get antivirals for Covid,
#MaeveInquest
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@RealGayArbys
Covid conscious people are seriously reducing the amount of time they spend amoung the infected, darting out with a mask when its necessary.
The Long Covid sufferers are mostly stuck at home unable to wonder amongst others.
The combination disappears a lot of the visibility.
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@naomicfisher
The other aspect is it encourages children to come in ill, which lowers attendance across the entire school by introducing infection. A kid that has minor symptoms will hurt hundreds of others to maintain 100% attendance and it especially endangers some kids that are vulnerable.
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3.5 years after the NICE guidelines were released and not a single severe ME service has appeared in the NHS.
The clinics often use banned exercise therapies.
The Department for Healths only plan is optional Training.
1.2 million ME patients deserve better than nothing.
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MCAS, POTS, brain inflammation and gastroparesis all have authorised treatments. But if you have Severe ME your doctors will draw a complete blank on what can be done and refuse to test and diagnose these conditions. This prejudice must end.
#SevereMEDay
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A healthcare worker might ask about supplements and self treatments. This is a trap, its a test to see if you are are mentally ill. The correct answer is Ibuprofen occasionally and nothing else.
All you can get from telling them is a mental health diagnosis.
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@1goodtern
Its a sad reality that almost everyone involved in
#longcovid
advocacy is personally impacted, either have it themselves or a family member who does. Alas the public isn't advocating for us, unlike with other diseases where they run charities and collect money and petition.
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If we say its only 30 days not nearly 2 months its doubling rate of hospitalisation is 4 days. If Beijing has double capacity its also 4 days. The range of uncertainty is very high. Its fast to spread that seems clear.
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"midway through the study, researchers lowered the bar for their statistical definition of what it meant to “improve” or “recover,”"
"We are living through a mass disabling event not unlike what occurred in the aftermath of polio or HIV"
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I am finding hard to come to terms with what was learnt this year. The government knew everything,
#longcovid
, airborne all of it and they lied so that everyone would catch it to pursue herd immunity. For them the deaths and disability are worth it.
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Its also an experience all chronically ill people have. Society believes it looks after people but this isn't the case, consider what we do with elderly people in homes and how lonely they are. Doctors believe the same propaganda so you have to go along with it.
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Massive 🧵
Tramaudy medical tips Part 1
Every one of the events alluded to in these Healthcare tips for the chronically ill is real
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@davro_t
Given its filming it was about Climate change but it turns out its really talking about every crisis we face today, the same is happening in them all. No one wants to do anything about anything broken in our society at all.
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There is not a single shred of scientific evidence that Covid is just Cold. All the science points it being a a lot more dangerous than Rhinovirus. But the BBC keeps trotting out these minimising opinion pieces despite it knowing about the science
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@DecorumManager
Alas I should add the climate change popular science was the 1970s. We knew about the warming affect in the 19th century and certainly at the beginning of the 20th century we understand the impact of continuing to pump CO2 into the atmosphere.
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@alexandrite113
This isn't a "The Jones have a new dishwasher and its awesome and I am jealous" situation, its a "this hurts and and my body is broken" situation. Its always the Psychology end of medicine that seems to conflate the two as equivalent!
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Given deaths are low so far that either says its low lethality or its early. We may be only 7 weeks in, the deaths for the hospitalisation explosion we see this week wont really appear for weeks.
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@1goodtern
So far I don't recall a single scientific paper that says "no wait we got it all wrong its actually fine". Even the papers that show the problem isn't as bad as the beginning of the pandemic are still projecting civilisation changing consequences.
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This disease has ruined my life. My day consists of bed rest usually without any entertainment in an eye mask and noise cancelling headphones. Otherwise it's just basic survival, food, toilet. Can't even shower more than once a week. Miss those sports weekends
#longcovidawareness
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A reminder that one of the reasons doctors in the UK don't follow the NICE guidelines is they published a joint statement saying they wouldn't and wanted to continue exercise and CBT.
They don't get to play innocent now and claim they think otherwise.
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"By measuring the response of their auditory nerve and brainstem, the researchers found that chronic tinnitus was not only associated with a loss of auditory nerve but that participants showed hyperactivity in the brainstem."
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@JaneJohnsonBakr
The consequences for being wrong is you wore a mask for a few more years. The consequences if they are wrong is lasting long term health problems and early death. They are not equivalent risks. Take it from a Long hauler of 3 years, avoid this plague!
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@jubunnies
With Covid the India health minister said rest up for 6 months after infection to avoid heart damage. 6 months! People aren't being informed on what it's going to take to avoid Long Covid, realistically it's the end of all sports or athletes will constantly die.
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If a doctor asks you what you think is wrong after discussing symptoms it's a trick question, they don't know so you certainly shouldn't. If you show any expression that you have an idea then you have consulted Dr Google and the real cause is health anxiety or Munchausen.
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You got referred to a chronic fatigue clinic, the website says its NICE 2021 compliant. The first phone call goes badly, they don't treat severe patients. In what other conditions is it acceptable for the doctors to refuse to treat the most afflicted?!
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The exclusion of Severe ME patients from research is a big problem. They are the strongest signal for what is different in the bodies of ME patients and yet few studies have looked into them. The unique elements of this disease must drive future research proposals.
#SevereMEDay
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@1goodtern
There is no peer reviewed science in any notable journal saying that COVID is harmless. It's all over the press and self published but there is no actual real biological science supporting their position. Which shows just how bad the press is behaving platforming it.
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I can't hear that tinnitus but I know its there because the balance system is messed up completely.
That thousand yard not present stare from not having slept in months. The blinking from the dry eyes.
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Never speak to healthcare about research. They don't read it themselves and they don't care for its findings. It will mark you as a problem person and never get care for anything again.
Research will take 20-30 years to become medicine (and its no guarantee).
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"Maeve was scared to eat and lift her hand."
Are fear and scared really the right words for someone with energy issues?
#MaeveInquest
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And all the house bound people equally are travelling down the street in their houses?
#pwlc
So fellow Long Covid patients do you have a house that travels down the pavements that prove you exist?!
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As a helpful patient you might think a history or a summary sheet of your condition will help. Doctors wont read it. It only harms you if you appear to be organised, instead focus on crafting your verbal single allowed symptom description to match NHS guidelines.
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Last year I linked to two studies showing that tinnitus was caused by the brain stem neurons compensating for damage to the nerves to the ear. How the heck is mindfulness going to repair nerve damage exactly?!
Can you help?
@LeedsTrinity
and
@WitsUniversity
are looking for people with tinnitus to take part in a new study, investigating the long-term effects of an eight-week mindfulness intervention.
To register your interest:
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🧵I suspect, but can not prove, that humans have the innate behaviour to ignore the chronically ill. They will look away and leave those suffering permanently to die after a few years. It overrides even family bonds.
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⚠️UNDIAGNOSED PNEUMONIA OUTBREAK—An emerging large outbreak of pneumonia in China, with pediatric hospitals in Beijing, Liaoning overwhelmed with sick children, & many schools suspended. Beijing Children's Hospital overflowing. 🧵on what we know so far:
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Telling ME/CFS patients that their condition is psychosomatic causes suicide ideation.
"...factors contributing to suicidal thoughts were (i) being told the disease was only psychosomatic (89.5%)....."
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Tomorrow I am in for a scan. I have done everything I can to arrange this as a completely horizontal trip. My fear is being held against my will or my accommodations and advanced consent broken. It shouldn't be like this, but alas it is how it works with ME and LC in the NHS.
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A few days ago I said I was bracing for the backlash from the Maeve Inquiry. Seems its started today with the healthcare industry pushing out opinion pieces and attacking the Maeve articles on social media. Its a disgrace they are doing this in response to a young lady dying.
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One of my top concerns after today is that the guidance on nutrition around ME is wrong. We need faster escalation of intervention or it starts a downward spiral. Wait and see kills. Our guts do fail, tolerance is the issue and it needs bypassing and supine feeding
#MaeveInquest
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The emotional state required to survive the Long Covid experience involves the unshakable belief you will be recovering while also accepting the brutal reality of where you are and how bad things are. You have to act like a prisoner of war being tortured to get through.
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@tarmac_xx
Absolutely. You are still super popular and you play board games or whatever seems doable. Book club with 5 close friends weekly. They think friends stick by chronically ill people so you have to play to that societal expectation.
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@NateB_Panic
Probably about 300k of us now this sick stuck in bed suffering every day. The NHS won't accept we are ill, the government is investing no money to research and the department for health won't even tell people this happens. We are funding our own public messaging billboards.
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