News from Australia

Upcoming webinar: Dr Sonya Marshall-Gradisnik, Immunologist and Researcher

Topic: An Introduction to current NCNED research; including calcium ion channels, low-dose naltrexone (LDN), health economics, and the relationship between Long COVID and ME/CFS.

More details here: https://mecfssa.org.au/event/agm-and-seminar-dr-sonya-marshall-gradisnik-immunologist-researcher

 

Queensland researchers find overlap in pathology of long COVID and chronic fatigue syndrome

https://www.abc.net.au/news/2022-08...-fatigue-syndrome-pathology-overlap/101318522

 

Depending on timelines it does not look like they are the first to find overlaps between ME and LC. They may however be the first to investigate calcium channel issues in both diseases.

 

Dr Marshall-Gradisnik is quoted as saying:

“We understand the pathology of ME/CFS”

I do wish people would not over state their case, there have been other lines of enquiry at this stage before that have not yet provided answers or have proved to be dead ends. This is very promising research into ME and now its overlap with Long Covid, but it is still the early stages of investigating the aetiology of the condition(s) and its potential treatment(s).

Unfortunately this over selling gives ground to the doubters of the existence of the condition(s) as a biomedical illness, who can say there have been many investigations of the physiology and biochemistry of the condition but none have provided concrete answers and take the, albeit unjustified, leap to say therefor it must be psychosomatic.

 

Zero effort. Zero clue.

https://twitter.com/user/status/1555675017228140545

 

The stock photo of the women hunched over her keyboard . . .

 

I wonder if LC patients have trouble with alcohol as often as we do. If so the no alcohol is a no brainer. (Pun intended, kind of.)

These comments are from one ME patient's perspective, but I would be surprised if not relevant to any LC patients.

Brain fog can make reading or puzzles impossible if severe.

Aerobic exercise can greatly worsen brainfog.

If we could sleep well it would be great. 40 years of medical help to do so and I am still waiting. Funny enough I have had a rare pretty good sleep lately, on four or five occasions this year (and none for the prior 40 years) I am hoping it will become more common.

"Well balanced diet" is a big trick. According to whom? I have yet to see much science on whether or not LC metabolism has been explored to see if its skewed. If its like ME metabolism getting dietary balance is almost impossible for at least some of us, at least some of the time.

ETA By good sleep I mean waking up feeling good and it persisting for more than minutes, up to an hour or two. I do not mean fully restorative sleep.

ETA 2 Severe brainfog on one occasion even left me incapable of speech. Reading would be a fantasy under those conditions. This kind of issue is more likely when severely sleep deprived.

ETA 3 Its sad this advice is coming from my local health department.

 

Yup. But I doubt it's anything more than just generic advice. To be aware of why, the fact that alcohol is a major relapsing factor for many, would need the same awareness that understands that so is exertion. Especially given the rest of the advice, it's 99.99% certain it's not based on relapses, just the same old "eat well, think positive, exercise" mantra.

 

Almost certainly just generic advice. Its what they tell many people with many different conditions. We don't have a clue turns to give general advice. There, we did something.

 

This is incredibly out of touch. PwLC have cognitive impairment so bad it's disabling. They need medical treatment, not doing crosswords.

 

This is the kind of thing they tell patients in very early dementia. It helps the brain retrain a little. It does nothing for underlying causes of impairment.

 

If there are issues re calcium channels (and it's something I'm interested in) then I'm guessing they may turn up in Chris Ponting's GWAS study.

I'm not clear why a GWAS study hasn't been funded (to my knowledge) in Long COVID - maybe one will be funded---.

 

See this thread:
Australia: 2022 Parliamentary inquiry into Long Covid and repeated covid infections - submission deadline 18 Nov 2022

 

Chances that he is aware that the organization he presides has denied and obstructed all efforts to get this long-standing problem recognized? Between zero and nil. Meanwhile they will be pushing the exact wrong care for it, making this problem even worse.

https://twitter.com/user/status/1569429010215751681

 

clinic in NSW

https://mojoklinik.com.au/conditions/chronic-fatigue/#

 

This crowd is in one of the most expensive areas in Sydney. They offer treatment for 53 different conditions. It is run by an integrative medicine practitioner. Nuff said.

 

Copied from the Long Covid in social media and the media thread

At a press conference following Australia's National Cabinet meeting today, the Chief Medical Officer made this claim:



This was to justify the removal of mandatory isolation requirements.

(And, of course, if GPs are dismissing everyone with post-viral symptoms as having "anxiety", then post-viral illness won't appear to be a problem.)

He was contradicted by the head of the AMA (a union representing some doctors) in an interview not long after. Of course, he reveals his total ignorance by claiming that you don't see cases of "long flu" after influenza infections.



[I had an appointment with my specialist a few days ago. She mentioned that the main Long Covid clinic at the Royal Adelaide Hospital has a waiting list of 2500 people. Apparently the list is growing by 100 people a day.

Edit: I should add that the RAH clinic requires that the patient has a 'confirmed' case of covid via positive PCR or RAT and that it has been over 12 weeks from the initial infection, so this would rule out many people.]

 

Merged thread

17 October 2022
New research to investigate long COVID in Western Australia
The Department of Health is asking Western Australians to participate in a survey that will explore the impacts of long COVID.

Participants, who had been diagnosed with COVID previously and agreed to participate in future research, will be contacted by the Department via SMS.

Senior Medical Adviser for Communicable Disease Control Dr Paul Effler said the study would help shape what resources and future health care needs WA would require for Long COVID.

“WA’s high vaccination rate when we were hit by the Omicron variant means information about long COVID from other countries with lower vaccination rates, and which experienced different variant waves, is not likely to be applicable to us,” Dr Effler said.

“We’re encouraging anyone who receives the survey request to respond, as it will help us identify risk factors for developing long COVID and estimate the proportion of people in WA still experiencing symptoms after their initial illness.

“Even if you quickly recovered from your COVID illness and don’t have symptoms of long COVID now, we still want to hear from you.

“Comparing answers from people who developed long COVID to those who did not helps us gain a better understanding of the risk factors and potential causes.”

If people have questions regarding the survey or any difficulty completing it, they can call the Department of Health Monday to Friday from 8am to 4pm.

(ENDS)

Media contact:

WA Health Media

T: (08) 9222 4333

E: media@health.wa.gov.au

Follow us on Twitter: @WAHealth

https://ww2.health.wa.gov.au/Media-...o-investigate-long-COVID-in-Western-Australia