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
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?
- 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?
- Only follow official advice from particular organisations?
- 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?
- 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.
- 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
