New influx of Post Covid Syndrome Patients Shocked at the lack of support from the Medical Profession

[Countrygirl]

And so it begins with a new population of (possible?) ME patients who are not aware of the nature of the world they are entering. They are expecting to be believed, to receive medical support and appropriate treatment.

They are clearly bewildered at the response to their situation.

It is far too early, of course, to equate Post Covid PVS with ME, but the response/dismissal of their symptoms is very familiar.

The link takes you to a large number of posts written by Post Covid Syndrome patients who are shocked by the lack of support that they are receiving for their ME-type state which they are identifying as 'CFS'. They are being diagnosed with anxiety, told they are fit for work when they cannot function and one has been threatened with sectioning by his family. History is certainly repeating itself.

Contact needs to be made with these people and they need to be directed to PR where they could start their own threads and maybe we can help and advise.

One who contacted me by phone has been advised to follow the NICE guideline for treatment i.e. GET and CBT. I think we can do better than that.

https://www.reddit.com/r/COVID19positive/comments/gc1apo

I'm sick and tired of the dismissal by the general public!! M26/52 days never ending symptoms

I've been the sickest I've ever been in my life at this point. Please see my post history for a full run down of symptoms and progression but basically I'm still having lung attacks where I can't breath more than 20% capacity and my lungs feel like tire rubber. I'm also having neurological issues that have essentially left me feeling brain damaged. If you have an understanding of CFS/ME symptoms; that's what I'm dealing with.

I'm unable to do anything but look after myself day to day. My business has gone out the window. I can't manage to get out to do shopping at this point because I'm so dizzy/confused, physically weak and breathless.

Yesterday I asked my doctor for a CT scan referal as my lungs have got worse in the last week after not improving but staying stable for a while. 52 days and I'm still struggling to breathe like 'I can't talk, need to save my breath' can't breathe for hours on end. The doctor refused to refer me. Instead she would refer me to a 'medically unexplained illness clinic' ... essentially a mental health department with talking therapies. Sorry, since when was being unable to breathe through physical ailments medically unexplainable?

The UK is rife with a lack of understanding and diamisal. Comments like "if you're under 45 you're fine. You'll experience a minor illness". I'm 26 was previously working out 5x a week and counting my diet intake / macros. At a guess I'd say I was healthier than 70% of the general population in my age group so how can anyone assume long term saftey of any age at this point?

Why is the media focusing on the mortality figure for the old and the infirm when it should be educating on the potential long term health risks to all ages. Its leading to complacency in the younger demographic rather than adherence to self safety measures.

No, I dont want to breed fear, but a sense of blissful ignorance is not the answer; Ignorance of the situation is how we got so deep into this mess in the first place.

It's dangerous to minimise the severity of this illness for those infected who need support and validation to heal. It's also dangerous to encourage complacency in all ages in favour of a positivity bias. Alot of people here in the UK are behaving as if this is nothing more than a minor ailment, it's shocking.

I'm tired of being personally ignored and hearing all ages of people laugh or downplay the dangers of this illness for the young and healthy when I'm sat here looking at a life that will never be what it could of been before I got infected. They have no idea how lucky they are to have good health!

Is anyone else experiencing the same dismissal and disbelief from those around them?

Is anyone else still going on 8+ weeks dealing with this?

Edit: I wrote this yesterday morning. Over night last night, I'm pretty sure I had a heart attack. I have no idea how I survived what ever it was. Feel like I'd rather I didn't so I don't have to have another round of what ever that was.

It felt like boiling water being poured onto my heart. My heart now sounds like it's fluttering on some beats causing 3 contractions instead of 2. I can barely move but I'm scared to call for paramedics since when I did before they dismissed me and made me uncomfortable. I feel like my death is imminent. No idea how I have made it through the night. The pain was like nothing I've ever felt before, would love access to some serious pain killers to make it a little easier.

Monkey_lord

49 points·1 day ago

Hi mate. 33 uk here. Exact same boat. Its reassuring to know others are experiencing the exact same thing.

So my story is very similar. I fell Ill on the 8th of march, think that's about the same time frame as you. Things got really bad then they improved a little. But I've been left completely crippled physically. Like you said I dont even want to talk because it causes me to become breathless. I fear walking downstairs I fear simply going to the toilet because doing so puts so much fatigue on me, I get breathless I want to go to sleep. I have never felt so pathetic and weak. What is so infuriating about it is the days where I feel ok, you become hopeful it's over and then you just disintegrate. Waves of chills nausea and the perpetual sore throat. My cough is almost non existent now but it comes back when I exert myself it's more of a tickle then anything.

My employer was up my ass about coming back but now they dont even message me back when I text them my sick note. I assume they are scheming how to fuck me over for absence when I get back. My freind who works there basically told me as much that they think I'm bullshitting. My mother has basically disowned me and made out I'm some kind of mentally Ill person who was never sick to begin with which is all kinds of wierd and caused alot of friction (longstory but I'm quarrentined in her house with my younger brother who is also now sick the guilts I feel are real) sooo at somepoint shes going to be kicking me out of here and I'm just clinging on trying to get by questioning my own sanity. Like dude what if I am actually crazy. And then I read these posts.

The only thing I have going for me is the dr I last spoke to ,she out right said it is most probably post fatigue/ME and asked how long I felt I needed be home to recover. She was great. I know it's a pain in the ass mate but you gotta keep trying till you get a decent dr to talk to. The system is set up to trample nice people that dont want to be impolite. Until I spoke to the nice dr I was also getting fobbed off.

I know you're not crazy and I know exactly how you're feeling. I think we will be ok long term it's just going to take time, alot of time. Fuck anyone that dosnt understand that and I hope for them they never experience it, it's been eyeopeneing to me certainly. The thoughts of having to queue up at the fit for work program and convince a panel of twats I'm to weak to look st a screen for 8hrs terrifies me.

So some positives 50 days isnt quite 2months lots of viruses take up to and over 2months to fully recover. Hell even the flu can to do that to a person. We got the bat plague we're in uncharted waters. We're writing the history books. I think in time what we're talking about will be widespread and accepted.

 

[heapsreal]

If they just stay positive and exercise?????

Were there many cfsers that came from the SARS outbreaks and other recent similar viral outbreaks?

 

[Countrygirl]

Aggh! It has done it again.......................I give up and will leave it to a kindly passing mod. Sorry, folks.

I cannot get the link to post.

I suggest, if you want to read the huge long list of Post Covid stories, you pop over to reddit where you will find them.

 

[Countrygirl]

If they just stay positive and exercise?????

Were there many cfsers that came from the SARS outbreaks and other recent similar viral outbreaks?

I think the research on the patients who were the medical staff found that about twenty percent developed a ME-type chronic illness @heapsreal . Somewhere on PR the paper is probably linked as it has been doing the rounds.

 

[godlovesatrier]

My friend got sick in Edinburgh very quickly. It must have been one of the very first bubbles because he's now on week 8. He had it for about 3 weeks, didn't go into hospital but came close. However his recovery has been marred by a severe chest infection (anti biotics for that), difficulty breathing, fatigue, lethargy, pain in his lungs consistently and constantly over a 5 week period which gradually reduced in the latter weeks to a dull ache. I obviously told him my story and warned him against even going out for a walk unless he felt at his normal fit and healthy "strength". That was a hard one to describe.

Many people will just carry on as normal, thankfully my mate is quite laid back, doesn't excercise, has a horizontal personality, but for those who are more intense, might work harder in general or have jobs that are just as bad they are more likely to induce a full on lapse into ME symptoms while their PVFS clears.

I've told everyone I can about this story, but healthy people forget extremely quickly and most people think I am a hyperchondriac, because they just do not - do not remotely - get the disease.

God forbid anyone gets transferred to that north west GET clinic, it's an abomination, should be torn down.

 

[Wolfcub]

Those poor people.

What I always found hard to understand is why so many in the medical profession throw people on a scrap heap when they have an illness that won't go away in a couple of weeks.

 

[godlovesatrier]

Those poor people.

What I always found hard to understand is why so many in the medical profession throw people on a scrap heap when they have an illness that won't go away in a couple of weeks.

It's disgusting. Nor can I either.

 

[Wolfcub]

Aggh! It has done it again.......................I give up and will leave it to a kindly passing mod. Sorry, folks.

I cannot get the link to post.

I tried that link too @Countrygirl, and got exactly the same result. It won't post as a link, but only as text. I wonder if @PatJ might have any idea how to post it as a link?

 

[Learner1]

@Countrygirl Thanks for alerting us. This is a tragedy. What is the same is the medical profession's inappropriate management of these patients. Unfortunately, from the descriptions, it sounds like they are suffering from lung damage and hypercoagulation issues - the little blood clots everywhere described in the very graphic reports coming out of New York City. The troubles breathing, heart attack, etc. track with this. I hope these people can get better help. But, though CBT/GET is inappropriate as are referrals to "medically unexplained illness" clinics, the treatments that will likely help these newer patients are vastly different than those appropriate for ME/CFS. Where we can help them is in encouraging them to advocate for themselves to have proper Investigation of their problems and to get the treatment they deserve.

 

[wigglethemouse]

I cannot get the link to post.

@Countrygirl @Learner1 the link works for me

For those that can't see the link, copy and paste it from here (I put the link in a 'CODE' block), and then click on view entire discussion.

https://www.reddit.com/r/COVID19positive/comments/gc1apo/im_sick_and_tired_of_the_dismissal_by_the_general/?ref_source=embed&ref=share

 

[junkcrap50]

40% of SARS-CoV (2002 epidemic) survivors still reported Chronic Fatigue after a long term followup 4 years later; 27% met CDC critera for ME/CFS
https://www.ncbi.nlm.nih.gov/pubmed/20008700/

PR post about this paper: https://forums.phoenixrising.me/thr...rs-later-27-met-cdc-critera-for-me-cfs.79381/

 

[IThinkImTurningJapanese]

What I always found hard to understand is why so many in the medical profession throw people on a scrap heap when they have an illness that won't go away in a couple of weeks.

They are precisely what they're always accusing us of being, lazy. Of course, considering their workloads I should qualify that by saying, intellectually lazy.

Which is fine, I'm not judging.

But I will rain on your sunny day when you start judging me.

 

[PatJ]

I tried that link too @Countrygirl, and got exactly the same result. It won't post as a link, but only as text. I wonder if @PatJ might have any idea how to post it as a link?

The link works for me. I see it as a link and when I click on it my browser loads the reddit thread. Are you just seeing plain text?

XenForo is being tricky with the link. Here is an alternate link that goes to the same content: https://www.reddit.com/r/COVID19positive/comments/gc1apo/im_sick_and_tired_of_the_dismissal_by_the_general/

 

[ShepherdK]

Lots of weird anecdotes are flooding Reddit from around the world - individuals who are 60+ days into recovery are still suffering fatigue, exercise intolerance, developing allergies, and having immune weirdness. Some of these appear on their face like ME/CFS symptoms, but we won't know for another 3-4 months for sure.

https://www.reddit.com/r/COVID19positive/comments/gd7luy/sob_relapse_after_6_weekswhat_the_hell_is_this/
https://www.reddit.com/r/COVID19positive/comments/ge888t/tested_positive_for_antibodies_why_do_i_still/
https://www.reddit.com/r/COVID19positive/comments/gedmsl/7_weeks_ongoing_symptoms_developed_food_allergies/
https://www.reddit.com/r/COVID19positive/comments/gegkvl/a_month_after_my_symptoms_cleared_my_cough_and/
https://www.reddit.com/r/COVID19positive/comments/gdz8yg/update_finally_recovering_now_having_allergic/

 

[Countrygirl]

@Countrygirl @Learner1 the link works for me

For those that can't see the link, copy and paste it from here (I put the link in a 'CODE' block), and then click on view entire discussion.

https://www.reddit.com/r/COVID19positive/comments/gc1apo/im_sick_and_tired_of_the_dismissal_by_the_general/?ref_source=embed&ref=share

Thanks @wigglethemouse ! I tried several times, but no joy!

 

[Countrygirl]

This isn't good.

A report on the after-effects of Covid.

This was posted yesterday by someone from Ireland: On a side note, a completely healthy friend of mine died on Friday. He’d had covid but recovered. His lungs gave out while popping over the road. It’s frightened me, as he was clear. I’m so over this

 

[Wolfcub]

On a side note, a completely healthy friend of mine died on Friday. He’d had covid but recovered. His lungs gave out while popping over the road. It’s frightened me, as he was clear. I’m so over this

Poor guy. I am sorry for your loss @Countrygirl and for his family. All we can say is that it wasn't prolonged at the end for him, bless his Soul.
That's how I felt : "I'm so over this". I have had no actual relapses of the virus, but don't trust it one inch. Now I have some slight lower gut issues which come and go. Some days perfectly normal.
But yes, I do still feel a tiredness which may be the ME/CFS as it would usually behave....or may be an effect of the virus. Nothing dramatic.
Not 100% sure it has completely left me yet......
It might have done. But who knows?
If it ends up doing the same to me, I have made my peace and am ready to go. Not at all scared.

Texts to friends and family all read " I'm okay. Coronavirus busted." I keep my concerns secret.

 

[Gemini]

Lots of weird anecdotes are flooding Reddit from around the world - individuals who are 60+ days into recovery are still suffering fatigue, exercise intolerance, developing allergies, and having immune weirdness.

Thanks for posting @ShepherdK .

Today's New York Times' article, "The Long Recovery: Not Sick, but Not Normal," describes Italian COVID-19 survivors with lingering symptoms.

Published on-line under the title "Surviving COVID-19 May Not Feel Like Recovery for Some:" [possible paywall]

https://www.nytimes.com/2020/05/10/...us-italy-recovery.html?searchResultPosition=1

Ron may find the patient's symptoms interesting. @Janet Dafoe (Rose49)

 

[lenora]

Poor guy. I am sorry for your loss @Countrygirl and for his family. All we can say is that it wasn't prolonged at the end for him, bless his Soul.
That's how I felt : "I'm so over this". I have had no actual relapses of the virus, but don't trust it one inch. Now I have some slight lower gut issues which come and go. Some days perfectly normal.
But yes, I do still feel a tiredness which may be the ME/CFS as it would usually behave....or may be an effect of the virus. Nothing dramatic.
Not 100% sure it has completely left me yet......
It might have done. But who knows?
If it ends up doing the same to me, I have made my peace and am ready to go. Not at all scared.

Texts to friends and family all read " I'm okay. Coronavirus busted." I keep my concerns secret.

Hi Wolfcub....I hope you're taking especially good care of yourself during this time. Even the flu virus doesn't leave after 2 wks., it seems to stay in our bodies wearing us down for a couple of months' at least. I wish you well and certainly hope you'll feel (and will stay) fully recovered soon. Yours, Lenora.

Country Girl....I'm so very sorry about your friend. I wish you strength. Yours, Lenora.

 

[junkcrap50]

Lots of weird anecdotes are flooding Reddit from around the world - individuals who are 60+ days into recovery are still suffering fatigue, exercise intolerance, developing allergies, and having immune weirdness. Some of these appear on their face like ME/CFS symptoms, but we won't know for another 3-4 months for sure.

We should go there and spread the word about ME/CFS and tell them that's what may end up happening to them.

Are there any good articles, videos, or books that introduce ME/CFS that would be helpful to them?