ME patient organisations and evidence based information for their members

[RoseE]

This post has been copied and following posts copied or moved from this thread: News from Australia

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?

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.

 

[Ravn]

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?

Dilemma all right. Exacerbated by the fact that many patient organisations have limited resources so need to make some hard choices. Ideally different organisations make different but complementary choices so we all can piggyback off each other a bit.

The worst scenario would be if everybody is trying to do everything - and doing everything badly.

Random thoughts.

Currently my sense is that patients have a number of options to connect and share experiences. These aren't always ideal but they do exist. But there's a big gaping hole when it comes to having the patient view respected by the medical profession. To be clear, I'm pointing the finger at the medical profession here, not at patient organisations. Still, and as unfair as it is, it is largely up to patient organisations (and their allies) to change this - simply because nobody else will. To me that means sticking carefully to a conservative and science-based approach because I think it's more likely to be effective.

There's a difference between how experimental an individual patient can choose to be and what an organisation should back.

Small organisations without the resources to review the science for themselves to develop all their own information could usefully refer to quality material from the likes of MEA, Emerge, and others. Saves resources and provides good information.

 

[Ravn]

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?
[...]
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?

The more I see of placebo effects and attribution bias the less I think those stories and studies have to offer.

Recovery stories claiming a causal link between this or that treatment or attitude are doing more harm than good.

There's a case for carefully vetted case stories for newspaper articles and such, vetted to make sure they don't make totally unsubstantiated claims about causality that undermines the organisation's message. Individuals can go to the press and tell whatever they like, in free countries anyway, but an organisation shouldn't feel obliged to go along with just any personal story. This argument is not about denying the personal experience but about critical assessment of any causal claims made based on it. Sadly too few people have even the most basic scientific literacy to be able to determine for themselves that they're seeing correlation not causation.

There's also a case for some types of case studies like documenting the experience of a patient with the health or welfare system. They're rarely justified though for documenting treatment experiences. What with placebo effects and attribution bias you can end up with some seriously misleading stories. Usually better to focus resources on some decent placebo-controlled trials instead.

 

[Ravn]

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.

A carefully moderated/facilitated peer support forum/group is a beautiful thing (that's why we're all here!) but things can go very wrong if you don't have the resources and the right people to see to it going right. Stating the organisation doesn't endorse anything in particular is not enough, nobody reads the fine print. There's the risk of the forum/group being overtaken by a few particularly vocal individuals pushing their own unevidenced - or even actively harmful - pet theory. Few people have the scientific literacy to spot the holes in their arguments and even those who do may choose to ignore them out of desperation. It's not difficult to find examples of peer support forums/groups going off the rails, and that's not just an ME thing. In short, if it can be done well, if the resources are there, then absolutely positively yes, otherwise... not such a good idea.

 

[Ravn]

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

The comorbidity question is particularly difficult and I'm feeling a bit bad about my pragmatic approach here. Which is that - for now - it's detrimental to ME patients and organisations to be too closely associated with any of the contested "acronym syndromes". This isn't intended to throw people with symptoms associated with those syndromes under the bus - everybody with any sort of distressing symptom should be treated for it as best as possible, irrespective of label.

My concern is that many patients seem to have a vague notion that having lots of labels somehow makes their suffering more real and important in the eyes of others, and that getting a label somehow will lead to some good treatment materialising. The reality is more often the exact opposite. The more labels you claim to have the less likely you'll be getting any treatment beyond CBT (for your false beliefs). This is wrong but right now, too often, it's what's happening.

Pragmatically, as a starting point, I'd encourage pwME to not seek additional contested "acronym syndrome" diagnoses but to seek treatment for individual symptoms. If your heart rate goes bananas every time you stand up, seek treatment for that. You don't need a POTS diagnosis to get treatment for orthostatic tachycardia (and in NZ few doctors have even heard of POTS and they won't thank you for pointing out their ignorance). If you get anaphylactic reactions, seek treatment for that, it doesn't have to be called MCAS. Most of the symptoms ascribed to those other syndromes are also ME symptoms so who knows what's what anyway. All we can do for now is try to treat the symptoms.

Pursuing another contested co-morbid diagnosis becomes only relevant when there's a reasonable chance it would give you access to additional treatment. For example getting a fibromyalgia diagnosis in addition to ME makes sense if it lets you try additional pain treatments, or you may have a doctor who doesn't believe in ME but will support your benefit application based on another diagnosis. And if the research landscape changes and solid validation and/or good treatment becomes available for a currently contested diagnosis our stance should change with the evidence.

There's also that resource question again. It's hard enough to keep up with ME research let alone trying to figure out what's up and down with all those other syndromes. This is best left to the patient organisations for those syndromes. PwME can join those anyway if they wish.

Some careful pussyfooting around the issue for an ME organisation could be something like this (and it's kind of stating the obvious):

• we don't have any expertise in conditions other than ME
• we are aware of several conditions which share symptoms with ME
• symptomatic treatments tried in those other conditions with overlapping symptoms may be worth considering in pwME where a patient fully informed of the possible benefits and side effects wishes to try them and where there are no contraindications

Note that I used the term conditions, not co-morbid diagnosis let alone contested syndrome. One, it conveniently fudges that I'm including contested syndromes in the category of condition. Two, ME symptoms overlap with a number of uncontested conditions as well so doctors should be encouraged to look for inspiration for symptomatic treatments worth trying wherever they can be found. This should be a matter of course but isn't always.

PS: I don't have any personal opinion on any of those contested conditions; I simply don't know enough about them. My comments relate solely to how the perception of those conditions by the medical profession impacts on how pwME get viewed and treated.

Edit: typo and messed up quote

 

[RoseE]

Thank you @Ravn for your response to my wonderings. I really appreciate it.
I haven't got much time today /this week to think and engage properly.

Pragmatically, as a starting point, I'd encourage pwME to not seek additional contested "acronym syndrome" diagnoses but to seek treatment for individual symptoms.

This makes very good sense to me. Although the best treatment protocol to use might be the one under the "acronym sydnrome".

Usually better to focus resources on some decent placebo-controlled trials instead.

Perhaps that is an approach to be seriously considered. When a group of people in a support group (or groups) want to test out whether magnesium /B12 injections /whatever makes a difference for them. But then I guess it is just all round better to do that as a university trial anyway - so that best practice is followed, and that there is some weight to the results.
btw I am aware of a support group for another health condition in our area instigating such a trial - could be worth finding out how that came together.

Again, thanks for helping to develop my thinking on these issues.