Quote Of The Year

Timeless Quotes - Sadly The Late Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

or

H. L. Mencken - "For every complex problem there is an answer that is clear, simple, and wrong."

Sunday, April 21, 2024

I Suspect We Have A While To Go Before We Can Declare Total Victory Over COVID-19 And Its Sequelae.

This appeared last week as a bit of a reminder.

Long Covid expert backs dedicated care clinics over seeing GPs

Exclusive

By Milanda Rout

Deputy editor of The Weekend Australian's Travel + Luxury

8:37PM April 19, 2024

The nation’s leading expert in Long Covid care has urged the federal government to back dedicated treatment clinics and abandon plans to shift the burden of patient care to GPs.

The government is leaving those suffering the debilitating effects of Long Covid – thought to be as many as 10,000 cases a month – to GPs and online support, in defiance of a federal ­parliamentary committee’s recommendation that supports funding more Long Covid rehabilitation clinics.

Professor Steven Faux, the co-founder of the Long Covid clinic at St Vincent’s Hospital in Sydney, said the government’s approach was flawed and Long Covid care should be conducted in rehab clinics like his, which takes a holistic approach to treatment.

Professor Faux, the hospital’s director of pain medicine who previously spent 22 years as the director of rehabilitation, has a six- to nine-month waiting list for new patients, he says in an interview for The Weekend Australian Magazine.

“The GPs are doing their best but there’s not enough GPs, and it’s very complicated because you’ve got to rule out everything else first,” Professor Faux says.

In January of this year, 100,000 positive cases were registered in the country. That means, 10,000 people got Long Covid,” Professor Faux said. “And every month there’ll be ­another 10,000.

“There’s lower vigilance with respect to Covid vaccinations and so we expect that people will get it a little bit more. There’s been no decrease in demand at the clinic.”

An RMIT study published last October found the nation had “insufficient Long Covid clinics to meet the demand”.

The Senate committee’s Sick and Tired: Casting A Long Shadow report into Long Covid ­recommended “funding be provided in partnership with state health departments for selected public hospitals to develop multidisciplinary Long Covid clinics linked to nationally consistent referral guidelines for screening patients with challenging Long Covid complications.”

Health Minister Mark Butler has not supported the recommendation, instead stating that those living with the condition would benefit from the ­government’s commitment to “expand general practices”.

Professor Faux’s clinical team at St Vincent’s includes nurses, physiotherapists, a sleep specialist, a neurological rehabilitation expert, and a psychologist. A rehabilitation program is tailored to each patient’s needs.

“If patients are identified early and they … start treatment early, the evidence from overseas is that they recover faster,” Professor Faux said.

Here is the link:

https://www.theaustralian.com.au/nation/long-covid-expert-backs-dedicated-care-clinics-over-seeing-gps/news-story/d4310ee45ef954e4309ce1e9987e008e

This rather feels to me that we are seeing an outburst of wishful thinking on the part of the Departmental Bureaucrats that COVID is over and we can all go beck to the way we were – even though there is good evidence specialist services will be needed for a while yet and that there is evidence that the disease has a ‘long tail’ for some small percentage of patients – who of course need care!

It is just all too easy to ignore these patients and their travails if most seem to have recovered but is is pretty unfair to pull away the chocks before all have been cared for as they needed!

I suspect there are more of these patients than the Government would lile to admit!

David.

3 comments:

tygrus said...

We need "specialist clinics for post infection conditions" to be led by biomedical research not led by psych. Funded to collect enough information for ongoing research for biomarkers & sub-grouping to best treatments. When listening closely with patients, doctors may realise how little they know, how much patient cases don't match assumptions & how wrong the textbooks are.

In late 2021, the World Health Organization used a consensus process to define post–COVID-19 condition as: 'occurs(ing) in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually three months from the onset, with symptoms that last for at least two months and cannot be explained by an alternative diagnosis'.

LongCOVID is an umbrella term for several conditions which include: persistent infections/remnants; post–intensive care syndrome (PICS); multisystem inflammatory syndrome; post–COVID-19 lung conditions including pulmonary fibrosis or scarring; post viral/infection fatigue syndrome; cardiovascular dysautonomia such as postural orthostatic tachycardia syndrome; viral re-activation; same/similar to ME/cfs; destabilisation or exacerbation of pre-existing medical conditions; other new and/or co-incident medical conditions.
The following have been debated for some patients & some evidence:
Inflammation in blood vessels & brain. Reduction in blood-flow/oxygenation of the brain. Reduces cognitive speed & less ability to process. Slower metabolism, less oxygen exchange, favours anerobic much more & earlier than aerobic metabolism, reduced mitochondria thus less mito activity, PEM. Reduced nerve conduction (weaker muscles, suppressed vagus or loss of smell), more muscle tissue death than expected from easy exercise. Higher lactic acid with slower clearance. Possible DNA/epigenetics contributing factors. Changes to gut flora. Immune system changes & autoimmune conditions. Preload failure (heart).

These are not from deconditioning, not psychosomatic, not FND not fixable with CBT+exercise. Patients meeting the ME/cfs criteria in studies show those treated with CBT/activity: most remain unwell; no significant benefits to objective measures; null results of objective measures were delayed or not published; benefits confined to small improvements to subjective measures but can be bias because these were unblinded; recording of worsening symptoms & harm were recorded inconsistently or ignored; more effective treatments are needed; high dropouts or not attending all appointments shows difficulty to follow or lack of benefit; of those completed study/treatment, most still meet criteria to re-enter study/treatment. Eg. The PACE trial lowered 1 threshold for judging recovery to be lower than the entry criteria so the results are misleading.
Patients started observing pro-longed symptoms before vaccinations, before longCOVID was coined & long before it was public. Many followed the usual advice to gradually return to normal activity (as many had done from previous infections) but this time was very different. It was only after the medical advice & failed rehab that they started more discussions & research to find others suffering in similar ways.

LongCOVID was not the first and won't be the last. It is causing a mass disabling event under our noses which most GP's are not equipped to properly diagnose & treat. No single other specialty is equipped & funded to diagnose & treat, so patients are left in the gap.

https://doi.org/10.1136/bmj.q613

https://me-pedia.org/wiki/PACE_trial#Criticisms_of_the_study

https://www.emerge.org.au/thinkgp-modules/

Anonymous said...

Goodness, this looks like a comment generated by ChatGPT!

tygrus said...

My comment wasn't from AI so I'm not sure if that's a compliment or something I need to apologise for?

Ask ChatGPT (or similar) "best treatment of me/cfs" the reply includes recommending CBT+GET.
Then ask it "Why are CBT & GET no longer recommended treatments for ME/cfs?" & you get an answer that CONTRADICTS the first. Current AI fails to understand new findings superseding old & poorly evaluates (or not at all) the relative quality/reliability of sources. A lie repeated enough times becomes the AI answer.

This needs an online reference book being updated weekly/monthly to keep up with the latest. CBT/GET/GAT are a tiny fraction of the research & not been helpful, there's a lot more information out there if you look. Current Australian guidelines & RACGP HANDI info include out-of-date rubbish. Patients have died because of this neglect so it's not benign nor mild. It needs top priority attention by all health professionals, researchers, governments & funders.

Some of the issues are documented & discussed by David Tuller (DrPH, senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health),
Trial by Error series.

Dialogues for a neglected illness (ME/CFS) : patients' accounts

Long Haul Voices: Living with Long Covid and ME/CFS

There's many more but it's very time consuming to watch & select the better videos. There's others that promote the psychosocial view but these cannot be generally applied to all patients, they fail in trials & exclude the most severe cases.