News from Australia

ABC - Finding hope for those living with Chronic Fatigue Syndrome - interview with Sue Collins, dr. Heidi Nicholl and prof. Ken Walder

Imagine going for a short walk one day and then the next morning you can't even get out of bed.

That's what life is like for some people living with what's commonly known as ME (Myalgic Encephalomyelitis)/CFS.

A new research project seeks to find out more about the disease, and identify some possible treatments, using existing drugs.

Guests:

Sue Collins, lives with ME/CFS and heads up the Geelong ME/CFS Support Group

Dr Heidi Nicholl, CEO of Emerge Australia, a national organisation working for people with ME/CFS

Professor Ken Walder, lead researcher of ME/CFS study at Deakin University

Duration: 16 minutes

https://www.abc.net.au/radionationa...living-with-chronic-fatigue-syndrome/12761110

 

Pretty good piece. Nothing much new (to us) in what Heidi and Sue say but they both come across well.

Ken Walder's section (starting 11:50) was brief but interesting. They're going to use white blood cells to create stem cells and turn those into a brain-in-a-dish (neurons & astrocytes) and skeletal muscle cells. They'll do this for both ME and HC cells to look for differences and then they're going to test (unspecified) drugs from a drug library on those cells.

@Michiel Tack, a bit early maybe but is this one for your collection of treatment trials?

 

That's good. One wonders why this has never happened before, but it's good that it's finally happening.

 

The interviewer commented that her mother had been ill with ME for several years, but was now largely better.

So often, there needs to be a "close encounter" before people take it seriously.

 

"I felt less alone": how Australians with disabilities are fearing life after the pandemic

From simple things such as increased social connections through Zoom, to telehealth, live-streamed arts and culture, and even digital religious services, there have been new opportunities in almost every aspect of daily life. It has been particularly life-changing for those with ME/CFS, a complex condition often known as chronic fatigue syndrome.

https://www.theguardian.com/society...abilities-are-fearing-life-after-the-pandemic

 

New ME/CFS SA website launched! Dec 11

https://mecfssa.org.au/

 

Just alerting Australians to this post in the News from NZ thread. The conference is largely an Australian thing.

More at original post News from New Zealand and the Pacific Islands

 

Radio programme/podcast

Is society getting better at understanding people living with invisible illness?, https://www.abc.net.au/radio/melbourne/programs/theconversationhour/the-conversation-hour/13105192

Features Heidi and Simone from Emerge Aus.

 

Fantastic effort by the ME patients interviewed! Very informative and recognisable. The GP who participated on the other hand talked about MUS and mind-body connection, and thus kind of involuntarily underlined the patient's stories of how hard it is to be believed and get proper help.

 

The GP was so bad that Emerge put a warning on social media to skip that part of the broadcast. Unfortunately these woo-woo views are very typical for Australian GPs in my experience -- particularly amongst younger GPs. There clearly are serious problems in the way these doctors are chosen and educated.

@Simone and Heidi did a great job.

 

I found this thought provoking - how do we get more understanding?

The dilemma for medical professionals
This programme highlighted for me the dilemma that medical professionals have. They need quality research to give them evidence so that they show they are proceeding professionally.

Key issues for many chronic illnesses being dealt with competently by doctors & others must be the lack of research and the time lag to have research confirmed by other studies & reviews, and then the further delay in the medical community being informed of the research /understandings. We are talking about this process taking years, meanwhile people suffer.

Different illnesses are at different points of this journey. e.g. I understand that MCAS (that many pwME use treatment protocols for with some success), is not a recognised disease as yet by WHO, CDC, etc. Diagnostic criteria and treatments have been developed by medical professionals working in this area, but these don't seem to be endorsed or acceptable to many medical professionals yet. (What must happen for an illness or protocol to become recognised?)

We know that much 'evidence' is not good (Refer the PACE trial or this book). And 'we' (the science and medical communities), still don't know what we don't know about the human body.
Why should the medical profession, or ourselves as individuals, NOT have an exploratory, 'cautious but open' mindset?

The dilemma for ME/CFS support organisations
The need for 'acknowledged evidence' creates a difficult situation for health condition support groups & organisations. Support organisations acknowledge that individuals are suffering, and can provide validation. Providing mainly validation and connections does not feel to be enough.

Is there a way to provide access to information that might help with reducing the risk of causing harm, and without looking unprofessional to the medical profession. Many individuals have found many varying management /treatment protocols to provide some improvement (or worsening) of their quality of life, without the benefit of 'evidence'.

How can support organisations balance being evidence-based (so that they are respected by the medical community and thus enable the building of relationships & sharing of information), while providing management /treatment information that may significantly help some of their people?

1. How can we assess information for usefulness and appropriateness for our community, or an individual?
   Would this involve understanding how to assess what research is quality research (I started a thread on that a while back), and respecting individual case studies /recovery journeys as valid - although clearly acknowledging that these are not reliable for anyone other than that individual?
2. Only follow official advice from particular organisations?
3. Is there a way for support organisations to have a supervised Case Study framework in place that enables individuals to carry out their own trial of new regimens in a considered way - as we know that case studies can be useful to provide evidence and impetus for further research. I guess we would need to involve a medical professional to supervise a case study?
4. Or do we allow individuals in our support organisations to share what has worked /not worked for them for others to read (i.e. a peer support framework), and note that we cannot endorse any advice given, and we don't get involved in the detailed discussion. But our health professional team may have insight that something is not safe for one individual (or all), or has risks, but is okay for another.
5. The ME Association UK does seem to operate a model for writing considered material about different management protocols and will recommend or not recommend, including background info and research on them. Perhaps follow their lead and /or refer to them?

e.g. How would we share information about MCAS with an individual?


____________________________
Anyway, here is a timeline of the programme on Invisible Illness, & references, that might help people access /promote certain parts:
(Regardless of whether it is of any use, preparing it helped me process the conversation )

The Conversation Hour, ABC, with Richelle Hunt & Warwick Long

• 00:00 - Introduction
• 03:11 - Simone Eyssens, pwME talks about: PEM; post-viral illness; well meaning suggestions from others despite even scientists & doctors not understanding the pieces of the puzzle; invisible nature; impact on carers; online support groups help to connect and share knowledge; disbelief from doctors.
• 14:19 - Sarah, pwME
• 15:50 - Leanne, pwME
• 17:30 - Dr Heidi Nicholls, CEO, Emerge Australia. The importance of terminology, CF is a symptom not a condition; difficult to find a doctor to make the diagnosis, although there is simple diagnosis criteria; current AU guidelines are 20 years old;
  (22:00) need for health condition groups to launch GP education because of lack of research;
  (23:00) launch of Emerge Australia's online forum
• 24:10 - Nellie - parent of 13 yr old daughter with ME/CFS
• 27:02 - Texts from pwME - Illness that people understand ??
• 28:10 - Sharon Whiteman, President, Lyme Disease Association of Australia. Functional neurological diagnosis /scientific uncertainty leads to patient blaming diagnosis; pwLyme in Australia go overseas for treatment.
• 31:53 - Karen Price, President, RACGP. No evidence /science that there are Australian tics that cause Lyme disease; Doctors have to go by the Science; A recent enquiry found only 1.9% of patients with Lyme disease were satisfied with treatment from the medical fraternity; Problems in ways we conceptual illness & the names that we give;
  (33:24) Refers to research from Assoc Prof Louise Stone, Australian National University, Canberra, on Medically Unexplained Symptoms for GPs. (Article on Stone's approach to MUS here). MUS does not mean the symptoms don't exist, rather that doctors don't have the science to justify the label. Patients then feel they have to justify their symptoms.
  (34:15 ) Richelle raises the difficulty in getting a diagnosis. Response... There is no diagnosis (criteria) available for a lot of symptoms, that do not fit a categorisation of a disease. Doctors can say we know it's not this, or not that, and that you are not in imminent danger. We can see they are functionally unable to perform the activities of daily life. Maybe our science is not good enough to give the label, so it may be given MUS label, but that doesn't mean we can't treat or emphasize with patients with these debilitating clusters of symptoms.
  (35:45) We are still influenced by the mind-body /Cartesian split promoted by French philosopher René Descartes (d.1650) - This is not for everyone. GPs are at the front of undifferentiated illness, and need to consider both mind & body. Karen talks about the impact of her son's asthma on his daily life, saying it effects his mood. We can't separate mind and body.
• 37:25 - Georgia, young pwME
• 38:56 - Geoff, lives with chronic illness. Difficulties when the illness cannot be seen.
• 41:14 - Christine, pw Endometriosis
• 41:59 - Bridget Hustwaite, author of ‘How To Endo'. Social media has allowed conversation & stories to be shared; has allowed talking about the reality; 1 in 9 Australians suffer from Endometriosis. Warwick asks if traditional media is at blame for not telling the stories... we are normalising the pain, but not normalising the conversation. wider acceptance of talking about it.
  
• 45:13 - Jacinda Parsons, author of 'Unseen' (article in The Guardian). People are grateful for the chance to talk. There has been a change, shifting from 'buck up', to allow talk about it; our world has problems with chronic illness as it doesn't go away; it is stigmatising /fatiguing to be the person to talk about experience of chronic illness.
• 46:35 - Bridget Hustwaite "We are not faking being sick, we are faking being well'. Emotionally draining to talk about it and feeling responsible for how the other person will react.
• 47:50 - what's next for getting wider experience? there has been progress. Changing the dynamic between patient & doctor; if the medical professional is not equipped to deal with a complex condition, admit that and pass the patient onto someone who knows. Patients need to be believed and heard. Organisations such as Endometriosis Australia need to continue work for funding & research. Action comes from conversation, let's keep that going.
  
• 45:13 - Jacinda Parsons Text from Kathryn, highlighting that 'Unseen' should be on the reading list for everyone in these professions. Illness brings huge insight, you get clarity of what is important. People feel very alone /isolated, it is a real thing. Important to allow conversations such as this. Thank you.
• 50:26 - Warwick Long... We talked about these diseases /conditions together because we felt the idea of suffering these different things, is a community feeling, of isolation, of being left alone.

This post has been copied to start a new thread, and posts discussing the dilemma for ME organisations moved:
ME patient organisations and evidence based information for their members

 

Wow, what an amazing summary, @RoseE! I’m still PEM’d from Friday, and didn’t listen beyond Heidi, but I heard about Karen Price’s mind-body duality piece. I can’t bear to go back and listen, but it kept me awake last night, so I ended up writing a Twitter thread to address it to help me let it go so I can get back to resting.

One good thing, is that Karen Price has agreed to have a chat with Heidi. Let’s hope she follows through!

https://twitter.com/user/status/1358198606344298496

 

Sad to hear that @Simone, but wow, what a fantastic conversation has been started (in lots of places) through your sharing and the rest of the item.

That is good news! I felt like Karen was empathetic and explained well why doctors feel the need to go to a MUS diagnosis (I still don't agree with that). Yes, tragic that she brought up the mind-body duality, but important given it is the predominant thinking perhaps. Now that is a core area that needs a lot of conversation!
We need articulate people like you and Heidi (and other folks in this forum) to be having the conversation for us. <3

I do not understand at all why medial professionals do not feel they have the training to make assessments like... "We don't have research that confirms that Australian ticks can cause Lyme disease, but this patient is presenting with all the symptoms that indicate that. Let's start the protocols for Lyme and see if they help".!

I am still unsure how to introduce a share of the programme on social media. Do I openly acknowledge our concerns with MUS diagnose and mind-body viewpoints, and the resulting lack of belief and treatments.
That could potentially alienate the medical profession that we trying to cultivate a following within.
But the open conversation is perhaps the key to shifting viewpoints..
Will think on it more.

Rest & recover @Simone. Important work was done.

 

Great interview except for Karen Price who made my blood boil.

Karen Price, the president of the RACGP, explains that they are limited by the lack of available diagnoses to explain groups of symptoms which may be serious enough to limit normal function but don't fit known diseases. She says the science and research are not yet good enough to assign an accurate label.

She says that GPs have no option but to put such unexplained symptoms under the MUS or the neurasthenia or the "chronic fatigue" label because there is nothing else.

She gives examples of the Cartesian "mind-body split". The first is her son who has severe asthma and whose mood is affected by not being able to do normal things. She also describes the exam student who needs to run to the toilet because of nerves, which "shows you can't separate mind and body".

Edit to add the top sentence.

 

But all of that is just irrelevant non-sequitur. No one is suggesting that there is mind-body dualism and those examples don't explain the symptoms in question. In the latter example, the physiology is well known, measurable. Such bowel symptoms can also be induced by certain drugs stimulating the same nerves, for example.

Anyone who is suggesting that there is no measurable peripheral component to MUS is the one who is invoking mind-body dualism.

 

Yes, these are the hard core dualists, but also dualist deniers. Hypocrisy in a tight package. There MUST be mechanisms, given that most MUS have lots of molecular findings, we just do not understand them. MUS proponents, if genuine, should be ardently looking for biomarkers. The rest are . . . I am at a loss for words.

 

Apologies if this has already been posted!

Tracie White was interviewed on Nightlife (ABC radio) about her book, The Puzzle Solver.

https://www.abc.net.au/radio/progra...rs-the-puzzle-solver-by-tracie-white/13175640

 

Article:
An unexpected upside of COVID
By Associate Professor Karyn Galvin, University of Melbourne

https://pursuit.unimelb.edu.au/articles/an-unexpected-upside-of-covid