If you are on twitter please do jump over and say thank you to Richelle and Warwick for such great coverage of ME/CFS. If they can see that we're interested and supportive we're much more likely to get more coverage.
PaulB last edited by
Their conclusions were largely based on one observation: that the syndrome affected more women than men. Therefore, they reasoned, it was likely to be psychosomatic.
In other words, this wasn’t science but misogyny.
And haven't we all paid for that poor science.
FranceyME last edited by FranceyME
@Jen_Em_Aus This is great, thank you for sharing. I have some more articles bookmarked (mostly recent) that relate to Long COVID and ME/CFS that I'll add here later. I just used up all my spoons registering and reading all the forum guidelines I'll pop in again later.
FranceyME last edited by
I've been collecting articles for reference since last year (all mentioning the link between Long COVID and ME/CFS) for a story I've been trying to write for the last six months. Hopefully I'll have my article published in the next month (although I said that back in August!!!). My hot mess of a brain has not been cooperating
NIH – National Institute of Neurological Disorders and Stroke (NINDS)
Working Together to Understand Long-Term Effects of COVID-19 – Published February 5, 2021
NINDS Director’s Message – New resources for large-scale ME/CFS research – Published February 5, 2021
California Healthline – published February 1, 2021:
The Do – published December 16, 2020
The Guardian – published November 19, 2020
The Science Bit – Beware the COVID-sceptic doctors – Published January 29, 2021
Frontiers in Medicine – Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? – Published January 18, 2021
The Sun – COVID KIDS Our kids were left unable to eat or walk by Long Covid and treatment was ‘torture’ – but docs don’t know how to help – published 15, January 2021 – Scroll down towards the end of article: Doctor’s plea for compassion UK Paediatrician Dr Nigel Speight, expert in child ME/CFS, explains parallels between Long COVID and ME/CFS.
The Spinoff NZ – Some advice for ‘long Covid’ sufferers, from the chronic fatigue community – published January 17, 2021
#MEACTION – Long COVID & ME
EMS WORLD – Long Haulers: The Continuing Casualties of COVID-19 – published 28 November, 2020
SBS Insight – Will lasting COVID symptoms shine a spotlight on those battling ME/CFS? – October 16, 2020
The Canary – The other potential coronavirus catastrophe no one is talking about – published March 15, 2020
I have a few more filed away, somewhere?
Jen_Em_Aus last edited by
@FranceyME Great list! Thanks for this, what a good resource
I've been collecting articles for reference since last year (all mentioning the link between Long COVID and ME/CFS) for a story I've been trying to write for the last six months. Hopefully I'll have my article published in the next month (although I said that back in August!!!).
Good luck for your article, @FranceyME! I look forward to reading it.
Fantastic contributions to today's Conversation Hour on ABC Melbourne by Emerge CEO Heidi Nicholl and severe ME/CFS patient Simone. The ME/CFS segment of this episode goes for the first 30 min. Thanks for speaking up for us, guys!
Thanks @Muscleburn for adding this. I do hope a lot of people were listening to this on that day!
Heidi and Simone and other sufferers did a wonderful job for us.
I have been blown away so many times that I always end up feeling “guilty” for having an illness that so many refuse to really believe. I’m not sure guilty is the right word... I’m struggling with trying to get out what I want to say here.
It’s just the hardest thing to try and convince people how unwell you really are with a smile on your face, as you don’t want to sound like a complainer
I have mostly stopped trying..... which is also not good in another way, as it is isolating.
Because you still cannot be magically better to show up to anything, so you disappear into the silence in a way....
Thank goodness for good friends and people here.
Thanks everyone for all the articles here
PaulB last edited by
Here's one from a specialist CFS GP in USA, who has been a sufferer, and who has a podcast:
There is a text transcript of the interview lower down, or you can listen to the audio.
Dr Ruscio overviews strong scientific research on different aspects of CFS.
In this interview, he talks with another clinician about peptides, growth hormones and the like (e.g. testosterone). The main peptides they talk about are CJC and Tesamorelin.
Here's their starting position:
totally the way anyone should be thinking about any new therapeutic. Open to it on the one hand, questioning it on the other.
I'll cut to the chase
When we’re talking about longevity, general health and modest improvements in muscle mass, then the CJC tends to do better. Then you have ones like the oral form, which is Ibutamoren or MK 677, which actually isn’t a true peptide, but it’s a peptide-like chemical. You can take it orally, but it has a pretty specific effect.
It works a little better when people are looking for fat loss and looking for sleep improvements, because there are sleep centers in the brain that respond really well to a growth hormone, releasing hormone of some sort.
Has anyone explored peptides, either in research or actual trial?
What health care professionals would support one through a possible trial?
@PaulB Thanks for sharing that I haven't heard of Dr Ruscio, but that doesn't necessarily mean much (I'm more up-to-speed with people over here than in the US). However, I would caution against undertaking any treatment based on a podcast (or, usually, any single source) alone. From a very quick glance, the podcast's results were based on one study (not of people with ME/CFS) and Dr Ruscio's personal experience (nice, but far too small a sample size even if he was rigorously scientific in his trialling, which the podcast doesn't suggest he was, and would be very difficult for an individual to do in any event, with placebo effects and other factors muddying the data).
I also noticed Dr Ruscio had some less-creditable topics covered on his sight, like the Gupta method, which casts some doubt on his potential reliability as a source of information.
It's well worth looking into, but rather than start a conversation on peptides in the "recent media" thread, it might be better with a thread of its own?