News about Long Covid including its relationship to ME/CFS 2020 to 2021

Neurological complications of COVID-19:
from bridesmaid to bride
Complicações neurológicas do COVID-19: de dama de honra à noiva
Avindra NATH1, Bryan SMITH1
https://www.scielo.br/pdf/anp/v78n8/1678-4227-anp-78-08-459.pdf

Lead author is lead researcher in NIH inpatient study.

ME/CFS is on the list of post-viral complications from the condition.

“Today, we have the ability to treat the rarest form of genetic illnesses, but we no have effective treatment in sight for the smallest of organisms that has spread to every corner of the planet.”

 

Which was an editorial referring to this article:
https://www.scielo.br/scielo.php?pid=S0004-282X2020005018101&script=sci_arttext

Neurological consultations and diagnoses in a large, dedicated COVID-19 university hospital

 

These are some of the things I have seen recently about steroids and COVID though they don't address long-COVID. I sincerely hope data is being collected about those who have had steroids and their level of recovery.
https://www.statnews.com/2020/09/02...-hospitalized-patients-who-analysis-confirms/

https://jamanetwork.com/journals/jama/fullarticle/2770279

https://jamanetwork.com/journals/jama/fullarticle/2770275

https://www.medscape.com/answers/25...reatment-of-coronavirus-disease-2019-covid-19

 

Coronavirus: 'Long Covid' patients need treatment programme, doctors say

 

I've had contact with Brendan. He aware of the background to the mess. It's up to him now.

 

The difficulty is going to be that some of the sequelae are difficult to treat, and that – for the specific symptoms that clearly indicate an ME response to the virus – we already know the best treatment.

Learn how not to make it worse, and understand that most doctors' advice is likely to be wrong.

It's going to be a huge challenge for patients.

 

Advice for LongCovid patients:

https://twitter.com/user/status/1303032386217586688


https://twitter.com/user/status/1303032875479003136

 

The Age: Long-term effects of virus shine a light on chronic fatigue sufferers
Opinion piece by Sue Green

It would be utterly perverse to say I’m glad COVID-19 leaves some sufferers with long-term symptoms, including crippling fatigue. I wouldn’t wish that on anyone. But as one who has coped with that very thing along with chronic pain for more than a decade, I am thrilled that it’s at last getting serious attention from the medical profession. Pity it’s taken a global pandemic, an illness (almost) everyone believes is real, to make it happen.

ETA: refers to Paul Garner, Francis Williams, New Scientist, Anthony Fauci, @dave30th and Steven Lubet.

 

Just seen that BBC File on 4 has a programme tonight at 8pm called The Long Road to Recovery. (I don't know whether it's based on the recent webinar with the same title.)

It'll be available on BBC Sounds after broadcast.

 

The Guardian: Coronavirus: 60,000 may have 'long Covid' for more than three months - UK study
Tim Spector, a professor of genetic epidemiology at King’s College London who runs the app-based Covid symptom study, said around 300,000 people had reported symptoms lasting for more than a month.

A minority have been suffering for longer; up to 60,000 people have reported having symptoms for more than three months. Some cases are mild, but others are seriously debilitating, with breathlessness and fatigue. Some people have had to use wheelchairs. Others say attempting to carry out everyday tasks such as shopping or even climbing the stairs can leave them bedridden for days.

 

https://twitter.com/user/status/1303314161011765248

 

MedicalNewsToday: 'Ill, abandoned, unable to access help:' Living with long COVID

“I think we, as medical professionals, need to be better at saying ‘I don’t know what’s wrong, but I’m willing to go and read up more about this’ […] You know, we’ve all been faced in the past with patients with chronic fatigue syndrome, with ME, and I can hold my hand up and say those patients I would always find very challenging because I didn’t know how to help them,” Dr. Small also admitted.

“I would feel a great deal of sympathy for [my patients], but I had no empathy because I didn’t really get it, and I didn’t get that reading a book for half an hour could leave you exhausted and needing time in bed […] I now, having suffered [through something similar], get it, I get it completely. It’s the weirdest thing, but using your brain can make you physically fatigued.”

Dr. Small went on to emphasize that people with long COVID need, first of all, to be believed and have their experience validated: “my colleagues need to understand that it’s OK not to understand what’s going on […], but just a willingness to validate the symptoms and say ‘I know you’re not making it up [is important].”

However, at the same time, she also points out that many healthcare professionals are burnt out and finding it difficult to engage on a deeper level at this time: “The problem is, everyone is exhausted, my colleagues are exhausted — this pandemic has exhausted everyone.”

 

I think his M.E. patients never went back to him when they found they were much worse after a year. Something he refused to acknowledge and they gave up trying to tell him.

 

At the moment there are worrying increases in positive covid cases amongst the young. The government really need to advertise long covid, as there is very little risk of death in this age group and therefor they don't feel covid is a problem for them. I think if the government were to advertise long covid it would be the biggest acknowledgement of post viral consequences there has ever been. It would be brilliant for us but not good for the bps lot.

 

https://twitter.com/user/status/1302965356584202246

 

What's amazing with all the people calling for rehabilitation clinics for post-COVID is that they already exist, are completely incompetent and considered to be both a rousing success at treating "chronic fatigue" while also not existing yet.

It's a success that does not exist and must be created anew. It's never been tried but has an extensive evidence base. It's recovery but not back to normal. There is no war in Ba-Sing-Se.

 

100% this is what happened.

 

I'm actually expecting that the NHS will stick with GET, CBT, BPS and the MUS approach for long Covid. British sufferers can only hope that researchers and medical staff in the rest of the world will do something [Edit: that will get to the ears of the British researchers and doctors] to help them. They are not going to get any help here in the home of the BPS rubbish.

 

LBC (Leading Britain's Conversation)

'Long covid' sufferers tell of battling debilitating symptoms that last for months

For Prof Garner, who regularly writes for the British Medical Journal on the topic, he compared his "extremely similar" symptoms with that of chronic fatigue syndrome (ME/CFS).

He added: "No-one wants to go there because of the stigma. But the ME/CFS community have been really helpful and they have fantastic tools and things to help.

"Problem is that GPs in this country think ME is a psychological disease. Some people that have had CFS/ME and that now have Long Covid said this is different."

 

Something to watch for, and participate for the unfortunates who got COVID:

https://twitter.com/user/status/1298304806440796171