1 in 3 Covid patients get neuropsychiatric problems....

Very interesting article and one I haven't read yet with all the searching high and low I've done regarding long haulers and the effect its had on them. As I am a long hauler since my family contracted Covid in early December. Here's my story.

Before December I had lost about 70lbs and had tons of energy and could be on the go from sun up sun down. I also have back problems on and off from a herniated disc from an accident when I worked as a parra pro in a special needs class about 10 years ago that had been flared up as the lady I had been taking care of had became more of a lift.

Anyways, my family of 5 contracted Covid when there was an outbreak at my sons work and we all had pretty severe cases of it to the point where we almost had to send DS 23 to the hospital. Thank God we all made it thru, but after about 3 weeks, then 4, I couldn't shake the fatigue, muscle aches, daily headaches & not being able to sleep at night. My Dr just said it was gonna take awhile to recover, continue taking supplements from when you had Covid.

Meanwhile I couldn't go back to work and I was still attributing my back pain to my herniated disc and about 4 weeks in I started noticing something new. Sometimes I couldn't think straight when I was having a conversation with someone and trying to put thoughts together. Or I couldn't remember words. Now, I consider myself a pretty smart cookie, so this was pretty scary, especially when it started happening often. I was like, oh, this is the brain fog they are talking about. At the same time the fatigue was so intense at times I would sometimes go to the grocery store and come home and be deep down to the bone exhausted, just from a simple trip to the grocery store. At night I would lay down in bed and all of my muscles in my body would ache. It was a nightmare and I would just think to myself, I have to just give it time, it will pass and I will get better.... my life was completely different then what it was before having Covid. I was living with pain daily, and I was surprised that my back pain hadn't cleared up with not having worked and resting it for a few months and I attributed to not be as physically active as I had been before. It was actually worse then before.

Of course my Dr was like this is what we are seeing in younger patients who have had Covid and there is no real treatment at this point. I can give a referral to a neurologist but.... Pretty much your SOL.

Along with us, my DS 24yo GF also got Covid and she is also a long hauler with the neurological symptoms like me, and we are always joking about the stuff we can't remember and sharing news articles and stuff with each other. We where very hopeful when we read about the possibility of the vaccine helping out long haulers.

So the 4 of us, Me, DH, DS and his GF all went to get our vaccine on the same day. This was a week and a half ago. DS and DH had the same reaction to 1st dose of the vaccine, sore arm and fatigue for a little over 24 hours. Me and sons GF had the same very strong reaction, though mine was longer and stronger as I have more longer hauler symptoms, as I thought was a curious note. We immediately had arm pain, that night, headaches, nausea, fever, chills, that deep down in the bone pain, basically a mini version of Covid. Mine lasted about 48 hours, hers for 24 hours.

So from everything that I've read, the theory behind the vaccine helping out the long haulers is that for whatever reason our systems didn't fully clear out the virus and pieces of it where left lurking and attacking the different parts of our bodies (layman's terms of course). When we get the vaccine it fires up the immune system and not only is it fighting of the response to the vaccine, it's also clearing out the leftover virus that was lurking around.

4 days after I got the vaccine I went to the store, and then another, and then another... and I wasn't as tired! My energy is coming back. Today I got out of bed and I was like, hey, my back hasn't hurt in a few days!! The back pain hadn't been from my disc, it had been from Covid. The body aches are gone. The daily headaches, reduced to every couple of days!

The one thing that I'm sad to say isn't resolved are my memory issues. I'm still gonna follow thru with my appointment with the neurologist. We shall see if anything comes of it. But they do say there is also more improvement with the 2nd vaccine as well.

It feels so good to feel more like my old self. It has been 4 very long dark months, not knowing what was going to happen. Never have I been so happy to be able to clean my house AND cook dinner all in one day!

And DS GF is also feeling better as well after getting the vaccine. Her memory does seem to be a little more better then mine.

When I was reading the article and it was saying about depression I was like, umm, yeah, it's freaking depressing to have your quality of life changed!!

But, who knows what long lasting damage it has done to my brain. That's what scares and worries me as the article is talking about as well. This is why I'm trying to convince all my loved ones to get the vaccine. We just don't know what Covid has done to ME yet....

lostwithout2peas Thank you for sharing your story. Such good news. I hope the second vaccine works more magic. Good luck with the neurologist. 

Yes, BUT...all the trumpsters will say,,mortality rate is 99.9%, and that's all that counts, right???

This would be interesting to me to see how it pans out. Not sure what other people are seeing where they live but our HS was releasing info about positive Covid cases and the vast majority were kids who were cohort C which was all online. So how would they even know where to start sorting the info. Was it the isolation? Was it the virus? Was it a combo of both?

MissBianca One of the marked things about my brain fog symptoms is my memory. I've been known to have THE BEST MEMORY ever. After Covid, I've had to take advice from a friend who we jokingly say has ADD and from my SIL who is very very forgetful. They would tell me about setting reminders, writing notes, all kinds of things that I never in my life had to do cause my memory was so sharp. I would even forget to tell my husband important stuff till it came up in conversation with my kids and he'd be looking at me like WTH? I will never forget the look on his face the day we where sitting at the dinner table and we where laughing and joking with DS and GF about the possibility of them eloping if they go thru with a short trip to Vegas in the summer. I was like, oh yeah, I forgot to tell you they where talking about that..... like shit, that's import stuff, our Son getting married and all!!!!

So I'm waiting to see if the memory part improves. Praying and hoping.

I'm glad my story could shed some light on your situation and I hope your able to somehow find some answers. Praying you too start to feel better as well!

Edited to add:
I suffer from migraines and while these headaches weren't migraines, I would describe them as you did, as a dull ache in the background!

Covid-19 long hauler describes relief after getting vaccine
New Day

www.cnn.com/videos/health/2021/04/08/covid-long-haulers-vaccine-cohen-dnt-vpx.cnn/video/playlists/coronavirus/

Jessamyn Smyth, a Covid-19 long hauler, hopes that two Pfizer vaccine doses may be what finally delivers her from the lasting effects of a virus that wreaked chaos in her life. CNN's Elizabeth Cohen has moreSource: CNN

Post viral research has sadly been lacking and with better funding hopefully there may be genuine treatments available in the future.

As a family we have had to watch others through the years enjoy normal life, that we have not been able to join in.
Birthdays, holidays, beaches , meals out, shopping trips, while we just have the same groundhound day overwhelmed with severe disability and limitations , never ending without respite.

A young previously healthy fit person who enjoyed life to the full before contracting a virus. For such a person to go downhill from post viral syndrome to develop a longer term condition currently without treatment or cure ,left so ill, unable to go to the toilet, read , write, remember things , even speak at times, fed through a straw and in unrelenting pain and crippling fatigue . A person who deserves so much better.
A person who was struggling to climb stairs post virally, holding onto furniture whilst trying to walk through the house.
At this point instead of resting they resorted to crawling on the floor to get around the house only to end up bedridden. Damage that could have been prevented if only the knowledge had been around at the time

Trapped like a prisoner in one room for for years . To know that this level of  severity may well have been prevented in the early stages of post viral problems had things been better known and understood is heart breaking. A person who believed pushing through and not giving in was the way through only  to learn that after it was too late that this was the worst possible course of action.

It is only now that official national healthcare policy is changing with regard to M.E / CFS myalgic encephalitis and chronic fatigue syndrome and patients are now told to rest and not exert themselves but this has yet to be implemented ( Aug 2021 ) and there are plans to re-educate the medical profession with further new training courses.Years of bad medical advice based on shoddy research will need to be undone and reversed and this will take time.

It has been hard for many years to look after a family member who needs full time constant care but is without medical / social care support.
How many people have to ask permission from their employer to leave work every two hours to help their family member on the commode and provide liquid food or drink whilst trying not to lose their job or leave their loved one in neglect.

Without medical support where do you turn ?
I have sobbed my way though medical and scientific papers feeling embarrassed and frustrated at how little I know.
Now and again through out the years I have plucked up enough confidence to contact some medical researchers and asked them to explain things to help me better understand , I have even been given some help from a retired professor.
I have tried to keep up to date on information with latest experimental treatments and clinical research trials.
I have no choice , I have to believe that there is hope on the horizon .

Even though we don't have any spare energy left over , we have gone on to raise money for biomedical research. The situation is untenable and even though we have not raised much , it is better than nothing.
I have also tried to put biomedical researchers in touch with possible sources of funding / grants .

This pandemic has been so horrible beyond words , it is shocking that only through this tragedy funds have been released to seriously research post viral conditions.

If I can protect anyone from going through what we have experienced , even though it hurts to tell our story , it will be worth it.

So for those with long covid, take care and do not push yourselves hard. Rest as your body needs it and give things plenty of time.
Post viral syndrome often clears up by itself after a few months.
For the few that may go on to develop M.E / CFS  myalgic encephalomyelitis / chronic fatigue syndrome ,then know that the worst can be avoided with appropriate management in the early days, with correct advice severity can be reduced. Rest rest rest and then rest some more.

Yup. Precisely why the diagnosis of “female hysteria” prevailed among medical professionals for hundreds of years ... and the echos of that belief still infect us.

I’m glad you found someone to listen to you. Let us know what happens.  

lesley, thank you , sending a great a big hug to you and your family.

lesserknownpea. Thank you so much for saying all this. I am sorry to hear about your and your fathers experience. Wishing you both all the best, hugs

GUARDIAN NEWSPAPER

Although I intended to take a short break away from 2peas I had to come back and share some more really good news.

The topics that have been covered in this thread have also now been covered in an article in the Guardian newspaper today. The journalist is George Monbiot.

Here is the link to the main article and a few excerpts.

. www.theguardian.com/commentisfree/2021/apr/14/super-spreading-long-covid-professor-press-coverage



In a presentation to the reinsurance giant Swiss Re, Michael Sharpe, a professor of psychological medicine at the University of Oxford and founder of a long Covid clinic, proposed that one of the causes of the syndrome was “social factors”. The social factor at the top of his list was an article I wrote for the Guardian, describing the suffering of patients with the condition.

I listed the symptoms of long Covid and compared some of them to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), the debilitating condition that afflicts around a quarter of a million people in the UK. Press coverage like this, Sharpe claimed, as well as the work of support groups and sympathetic doctors, could induce people to believe they had the illness, thereby spreading it. Long Covid, he appeared to suggest, is partly a psychological condition, so “the best treatment is psychologically informed rehabilitation”. This, we can only hope, will cure people of the fearful pox of Guardian journalism..

Until now, I’d never heard of Michael Sharpe. But as I began to investigate, I stumbled into one of the most astonishing scientific stories I’ve ever encountered. Sharpe was one of the authors of the famous Pace trial, part-funded by the UK’s Department for Work and Pensions, and published, in 2011, in the Lancet. It claimed to show that CBT and graded exercise therapy (GET) were effective treatments for ME/CFC.

A group of patients launched a five-year campaign to obtain the trial data, which should have been in the public domain from the outset. Their requests were repeatedly refused until a tribunal ordered Queen Mary University of London to release it. In 2016, the patients, with the help of academic researchers, reanalysed the data and found it did not support the conclusions of the Pace trial: there was no statistically significant difference between the outcomes for people who received CBT and GET and those who did not. Their findings were published in two peer-reviewed journals. It was an astounding victory for citizen science. The suppression of the data and subsequent collapse of the study’s claims has been dubbed PaceGate in the scientific press. In November last year, the National Institute for Health And Care Excellence published its analysis of the Pace trial findings and other claims that CBT and GET can treat ME/CFS. It found without exception that the quality of the science was either “low” or “very low”. As a result, it has now changed its draft clinical guidelines, advising doctors not to promote CBT or GET as treatments or cures for ME/CFS..

lesley , good job I am sitting down !

lesley , big thumbs up here too 

I mean’t to say earlier I have sometimes seen a twitter account by Dr Emma Reinhold , a doctor with EDS , 
and also Jenny Rowbury who is stroopwaffle on twitter , who has EDS too. I hope I have remembered their names correctly but they sprang to mind when I was thinking about your daughters illness.

.More tweets of support .....( still cant fathom how to do a link )


Prof Brendan Delaney
@bcdelaney1
GP, Chair in Medical Informatics and Decision Making, Imperial College London. All views expressed are my own. Diagnostic error, systems theory, LongCOVID
London, Englandimperial.ac.uk/people/brendan…Joined April 2015

A fine piece of writing by
@georgemonbiot
- and a very good summary of why GET and CBT should not be treatment for #MECFS - flawed research best termed 'pseudoscience' - and why they should not be used in #LongCovid either....

Thank you! Every day I'm surprised with what I can do. Today's victory was explaining a situation to a nurse regarding my husband and having very clear thoughts and my speech flowing. I didn't give it a second thought till I got off the phone, I was like hey, that was like my old self!! No problems at all!! I wanted to cry.