Recent media
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A couple of major pieces have been published linking long-haul COVID and ME/CFS in the last few days, thought it might be worth keeping track here.
Long feature in the New York Times from contributing writer Moises Velasquez-Manoff on 21 Jan.
TLDR:
'ME/CFS-like syndromes have been linked with infections for more than a century — including, most recently, those caused by the viruses responsible for the SARS and H1N1 pandemics in 2003 and 2009. Chiefly because of this association, several ME/CFS experts told me that they anticipate a wave of new patients — long-haulers who, because their symptoms are severe enough and last for six months or longer, will essentially be ME/CFS patients whether they receive the diagnosis or not...“I’m expecting to see an increase that could generate as many new cases over the next two to three years as exist already in the U.S.,” says Anthony Komaroff, a physician at Brigham and Women’s Hospital in Boston who has treated ME/CFS for decades. In other words, as many as 2.5 million additional people could become afflicted with a disorder that some have argued causes more illness and suffering than H.I.V.'
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From George Monbiot in The Guardian on 21 Jan (he looks like someone worth following!)
TLDR:
Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell. It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection.Yet ME/CFS has been disgracefully neglected by science and medicine. A paper published in the British Medical Journal in 1970, and widely reported in the press, set the tone for scientific inquiry across much of the following 50 years. It dismissed outbreaks of the disease as either “mass hysteria” or misdiagnosis. The researchers failed to assess a single patient or interview a single doctor. 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.
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It's not as recent (this article was published in October 2020) but I hope it's okay if I add this article by Natasha Mitchell from the Australian Broadcasting Network (ABC):
TLDR:
"Dr Small said many in the ME/CFS community are connecting with her on Twitter, hopeful that any research done on long COVID may also help them."They have been gaslighted by medics for a long time [and] told that their symptoms are psychological," she says.
"Chronic fatigue syndrome and all of the related syndromes that go alongside that population have been deeply let down by medicine.
"[But some with ME/CFS ask] 'why are you so special with your long COVID when we've had this for years and no one's believed us?'.
"I think we have so much to learn from each other, and a lot to gain from working together.""
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Thank you for sharing @passiflora - definitely ok to share! In fact very much encouraged! Here at Emerge Australia our general perspective on long COVID has been:
- COVID is 'unequivocally real' in the eyes of the general public
- There is a 'there but for the grace of God' kind of sense that most people can see that long COVID could affect them, their family member or loved one and,
- If they or a loved one did get long COVID, with associated fatigue, pain, cognitive impacts etc etc.. then they would absolutely want (and expect) high quality medical care and research for treatments.
If long COVID is linked conceptually with ME/CFS our community benefits in these three ways - we can show that ME/CFS was (in most cases) started by a 'real' virus or infection.. everyone is potentially susceptible (there's no 'type of person who might get ME/CFS) so it could be you, or your loved one; and finally, if you DO get ME/CFS or know someone with ME/CFS then they should - OF COURSE - have the highest quality medical care and research for effective treatments.
Our research director @Simone_Em_Aus wrote a great piece for us about it. You can read it here: https://www.emerge.org.au/blog/long-covid-offers-hope-for-mecfs
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@Jen_Em_Aus Yes this is an excellent article David Tuller calls a 'game changer'
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These look really interesting, Jen. Thanks for sharing!
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David Tuller's take on The Guardian and NYT features here: "Both compelling and well-written. Together, they signal a genuine tipping point"
https://www.virology.ws/2021/01/24/trial-by-error-game-changing-articles-in-the-guardian-and-the-new-york-times/
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@Jen_Em_Aus Thanks for sharing those. The NYT article is amazing. The journo spoke to so many researchers, and has provided a really great summary of some of the key lines of research! Great stuff! Long, but well worth the read!
And I’m so excited that George Monbiot wrote about us! I’m fangirling!
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Thanks for sharing that piece, @passiflora! That was such an important article! It sent such a strong message, and wonderful that it was published by the ABC!
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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!
https://www.abc.net.au/radio/melbourne/programs/theconversationhour/
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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.
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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.
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@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.
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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
https://schorline.ninds.nih.gov/2021/02/05/long-term-covid-19/NINDS Director’s Message – New resources for large-scale ME/CFS research – Published February 5, 2021
https://www.ninds.nih.gov/News-Events/Directors-Messages/All-Directors-Messages/New-resources-large-scale-MECFS-researchCalifornia Healthline – published February 1, 2021:
https://californiahealthline.org/news/article/long-haul-covid-cases-cast-new-light-on-chronic-fatigue-sufferers/The Do – published December 16, 2020
https://thedo.osteopathic.org/2020/12/long-covid-may-have-an-explanation-what-physicians-should-know/The Guardian – published November 19, 2020
https://www.theguardian.com/world/2020/nov/19/long-covid-overlap-emerges-with-me-including-debate-over-treatmentThe Science Bit – Beware the COVID-sceptic doctors – Published January 29, 2021
https://thesciencebit.net/2021/01/29/beware-the-covid-sceptic-doctors/Frontiers in Medicine – Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? – Published January 18, 2021
https://www.frontiersin.org/articles/10.3389/fmed.2020.606824/fullThe 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.
https://www.thesun.co.uk/news/13750564/kids-children-long-covid-symptoms-months/The Spinoff NZ – Some advice for ‘long Covid’ sufferers, from the chronic fatigue community – published January 17, 2021
https://thespinoff.co.nz/society/17-01-2021/some-advice-for-long-covid-sufferers-from-the-chronic-fatigue-community/#MEACTION – Long COVID & ME
https://www.meaction.net/long-covid-me-understanding-the-connection/EMS WORLD – Long Haulers: The Continuing Casualties of COVID-19 – published 28 November, 2020
https://www.emsworld.com/article/1225291/long-haulers-continuing-casualties-covid-19SBS Insight – Will lasting COVID symptoms shine a spotlight on those battling ME/CFS? – October 16, 2020
https://www.sbs.com.au/news/insight/will-lasting-covid-symptoms-shine-a-spotlight-on-those-battling-me-cfsThe Canary – The other potential coronavirus catastrophe no one is talking about – published March 15, 2020
https://www.thecanary.co/global/world-analysis/2020/03/15/the-other-potential-coronavirus-catastrophe-no-one-is-talking-about/I have a few more filed away, somewhere?
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@FranceyME Great list! Thanks for this, what a good resource
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@FranceyME said in Recent media:
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.
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@Muscleburn said in Recent media:
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!
https://www.abc.net.au/radio/melbourne/programs/theconversationhour/
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.
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Thanks everyone for all the articles here
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Here's one from a specialist CFS GP in USA, who has been a sufferer, and who has a podcast:
link text
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?
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@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?
