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

Status
Not open for further replies.
A narrow biomedical focus carries the risk of medicalisation, over-investigation and over-diagnosis as well as prolonged time with symptoms and reduced ability to cope with life with symptoms during rehabilitation [8, 9].
Click to expand...

Is this a common occurence in the world? o_O And what is wrong with "over-investigation"? My Hashimoto is so mild that it would have never been discovered so early without the thorough exlusionary diagnostic process for ME/CFS that I'm going through. But even without that, what is so wrong about doing some really thorough examinations? One would think it is a must when it's about a puzzling case.
 
Wyva said:
Is this a common occurence in the world? o_O And what is wrong with "over-investigation"? My Hashimoto is so mild that it would have never been discovered so early without the thorough exlusionary diagnostic process for ME/CFS that I'm going through. But even without that, what is so wrong about doing some really thorough examinations? One would think it is a must when it's about a puzzling case.
Click to expand...

A narrow biomedical focus carries the risk of medicalisation, over-investigation and over-diagnosis as well as prolonged time with symptoms and reduced ability to cope with life with symptoms during rehabilitation [8, 9].
Click to expand...

LOL - references 8 and 9 are just Vogt:
Vogt H, Pahle A. Health problems after covid-19: We need a holistic view of knowledge. Today's Medicine. 24 Nov 2020Vogt H. Covid-19 and »too much medicine« - re: Long covid: damage to multiple organs presents in young, low risk patients [rapid response]. BMJ. 21 Nov 2020. https://www.bmj.com/content/371/bmj.m4470/rr-7
 
NelliePledge said:
Would be interesting to hear her explanation how come she still has it if it is psychosomatic.
Click to expand...

If someone thinks that their emotional state plays an important role in them suffering from physical symptoms that doesn't mean that they're going to be able to easily overcome those symptoms. It's only certain psychosomatic models which seem to presume that patients' failure to understand the role of their emotions plays an important role in perpetuating their symptoms.
 
Wyva said:
Is this a common occurence in the world? o_O And what is wrong with "over-investigation"? My Hashimoto is so mild that it would have never been discovered so early without the thorough exlusionary diagnostic process for ME/CFS that I'm going through. But even without that, what is so wrong about doing some really thorough examinations? One would think it is a must when it's about a puzzling case.
Click to expand...
the simple answer is cost every investigation cost time and money . the whole point of the bps is the reduction of costs to insurance companies and governments in the case of publicly funded medical systems . this of course leads to many people suffering and dying because drs follow the advice to reduce costs.
 
I'm not sure where to ask this question, but this seems like a good place.

I almost certain that I've seen a quote somewhere about a group of ME/CFS researchers getting together (pre-covid) and asking the question of what it would take to get greater interest, recognition, funding, etc... for ME/CFS, with the mutual answer being something like "it would take a pandemic."

Does anyone know where (and hopefully when) this story originates? Is it from an article, book or speech, etc...?

Thanks in advance. I hope I'm not just imagining this. :)


ETA: Found it! It's mentioned in the first two paragraphs of this Time Magazine story from mid-October, 2020.
 
Last edited:
Letter to the Independent: People with chronic fatigue syndrome have suffered long Covid symptoms for years - why did nobody care?

Quote:
- Firstly, let me state that I have every sympathy with those suffering from long Covid. However, while not at all intending to detract from or belittle their battles, what is increasingly uppermost in my mind is the number of people like myself who have lived with ME/CFS (chronic fatigue syndrome) for decades, and largely had little or no acknowledgement, support or care.
 
I thought we had this already but can't find it.

Webinar: Post COVID-19 syndrome (“Long covid”) Where are we now?

Event Overview

Date: Tuesday 8 June 2021

Time: 19:00-20:30

Join us for a FREE update on development in understanding and managing the long-term effects of Covid-19.

We will be joined by the Office of national statistics who will share new figures from June 2021 on those who are affected by the ongoing symptoms of COVID-19. We will hear from clinicians who have seen more than 1500 patient describe the variety of clinical presentations that are emerging and offer updated advice on how primary care can ensure effective assessments are undertaken. We will explore the condition in children and also hear from a patient with lived experience talking about recovery and hope. There will be an opportunity to ask questions and hear about the launch of the new RCGP resources to help you learn more and keep up to date with the evidence as it changes.

Learning objectives:
  1. Understand the methods and estimates used in the June 2011 ONS survey of reported COVID-19 symptoms after one month
  2. Be able to describe patterns of presentation of Post COVID-19 syndrome (“Long Covid”)
  3. Understand how primary care can assess and support patients with Post COVID-19 syndrome (“Long Covid”)
  4. Be able to recognise Post COVID-19 syndrome (“Long Covid”)in children
  5. Consider the patient journey in relation to hope and recovery
  6. Be aware of the new RCGP resources available for Post COVID-19 syndrome (“Long Covid”)

Webinar Chair:

Dr Michael Mulholland, RCGP Vice Chair Professional Development

Speakers:

Dr Gail Allsopp, Lead for Clinical Policy RCGP; Associate Professor Primary Care, University of Nottingham
Daniel Ayoubkhani, Principal Statistician at the Office for National Statistics
Prof. Paul Garner, Professor of Evidence Synthesis in Infectious Diseases and Public Health
Dr. Melissa Heightman, Consultant Integrated Respiratory Physician at UCLH and Whittington Health
Capt. Ed Nicol, Defence Consultant Advisor in Medicine, Defence Medical Services
Dr. Elizabeth Whittaker, Paediatric Infectious Diseases Consultant, Imperial College Healthcare NHS Trust

https://rcgpportal.force.com/s/lt-event?id=a1U1i000006D4uyEAC&site=a0d0Y00000AeOP6QAN

Click to expand...
 
U.S.News Here's What We Know (And Don't Know) About Long COVID

Quote:
What's the connection between long COVID and chronic fatigue syndrome?
Providers and top health officials have noted similarities between long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. The syndrome is defined by a chronic and debilitating post-exertional malaise – worsening fatigue after even minimal activity. Some long-haulers have also been diagnosed with ME/CFS.

John Brooks, chief medical officer for the CDC's COVID-19 response, has observed the links between the diseases but has cautioned against calling them the same condition, noting there are some differences between the two. Brooks told U.S. News that many ME/CFS patients can't pin down the initial infection that made them sick, unlike long COVID patients. Additionally, he said, some long COVID patients have pulmonary and cardiac symptoms not typically seen in ME/CFS.

By studying long COVID, NIH and CDC officials say they hope more can be learned about ME/CFS, too.
 
Who has standing to complain to the RCGP about the Paul Garner involvement in the Long Covid webinar? I am sure many people would find his inclusion unacceptable if they knew the context of what he has been doing. Is it widely known?
 
Rather poor article that is very confused over why GET is prescribed in this context and does everything it can to avoid mentioning us while obviously referring to us, while completely missing the point about who is this patient population who cannot exercise and happy-thought out of this. The learning process is abysmally slow, most of this stuff was obvious to many of us a full year ago, the "experts" are still far behind the patient community and going at it too slow to catch up.


The mystery of ‘long COVID’: up to 1 in 3 people who catch the virus suffer for months. Here’s what we know so far

https://theconversation.com/the-mys...r-for-months-heres-what-we-know-so-far-161174
 
Status
Not open for further replies.
Back
Top Bottom