News from Aotearoa/New Zealand and the Pacific Islands

Agree, and in my mind, then the complementary and alternative medicine practitioners and every scam artist wanting a buck to target “chronic fatigue” and “chronic pain”, grab these scientific research words and pseudoscience is created and just one more to add to the massive vortex of BPS. You can change your genes and “epigenetics”, or gene methylation with diet, this supplement, this breathing and meditation app blah blah, as well as every permutation of the unproven Polyvagal Theory…

 

Interview with one of the authors of this study. Brief mention of ME with epidemiologist Dr Mona Jeffreys arguing both LC and ME should be classified as disabilities (which would give access to better support services, but I hold little hope for this happening as we appear to be looking at a period of government spending cuts in NZ)

https://www.rnz.co.nz/national/prog.../2018875322/300-000-cases-of-long-covid-study

 

A wave of unsettling articles today.

1) The one linked by Hutan is fine in itself, apart from the annoying headline (chronic fatigue). It paints a recognisable picture of severe LC/ME but finishes with a fundraiser demonstrating that the NZ system still doesn't recognise the level of disability LC and ME can cause. As a result the level of carer support available just isn't good enough, necessitating recourse to givealittle.

https://www.stuff.co.nz/national/he...n-darkness-with-chronic-fatigue-after-covid19

2) As for this NZ Doctor article, the reading of which counts as continuing medical "education" - aaaargh!!!
[from 17 Jan but I only just saw it]

So ok, it's good the patient (only 5 weeks post-infection) was given a decent cardiac work-up which is more than many ever get. But can we pleeeeease just drop the anxiety after reading stories in the media thing. For all we know the patient was anxious because they were worried about being diagnosed as anxious! Not without reason:

https://www.nzdoctor.co.nz/article/...fatigue-five-weeks-after-sars-cov-2-infection

3) Not about ME or LC but I fear we'll end up getting caught up (even more) in the rehab enthusiasm tsunami regardless. Paywalled ODT story about a new emg device for clinical use quotes one of the interviewees as saying that

https://www.odt.co.nz/business/transforming-lives-through-power-tech
The emg device discussed, in case anyone's interested: https://www.mremg.com/

 

If only I could express politely, how angry I feel, about the statements made in NZ Doctor, a magazine for all medical professionals but mostly for GP's.

GP's believe in NZ that ME/CFS should be "self-managed". They do provide symptomatic relief and many do work with pwME to offer newer treatments that arise from the Bateman Horne Centre in the USA.

It is a form of neglect as the health system are unable to provide many services in metropolitan cities, let alone rurally and there are major disparities for different cultural and socioeconomic groups.

The cardiologist says "at least they got a cardiovascular work-up". This really annoys me considering the clear literature on the ongoing impact of covid on vasculature.

Also there are huge waitlists (up to a year, currently in some centres) to see anyone in the specialty of medicine, let alone cardiology, due to the pandemic and many pwME have had their appointments pushed further out because of LC.

Again pwME we are being denied basic medical care and this statement agains underlies the continued psychologising of our biomedical illness. Of course they do not see the tide of disability happening now and will only worsen.

It is inconvenient, the country is dealing with a lot of economic difficulties and they don't want LC/ME cluttering up their GP practices and hospitals. There is little media coverage as other things dominate as the government thinks the covid pandemic is over and we should all be living with it. The MOH spokesperson just ignores questioning on it.

LC and ME advocates, pwME/pwLC have worked hard to educate and collaborate together, which includes with the college of GP's, as part of the LC taskforce and development of LC services in NZ.

Many pwLC are just being rediagnosed with ME/CFS and put on the "scrap-heap" and having their covid related treatment unfunded and then being denied further treatment except some breathing and pacing advice. Nothing about OI/OH, cognitive problems.

They are advised to join FB support groups run by NGO's that are heavily into wellness and perpetuating the un-evidenced use of excessive supplementation, every latest fad for neuroplasticity, naturopathy and even support members promoting LP.

Integrative GP's are gaining momentum and trying hard to create their new subspecialty within an Australasian context, conferencing together, so they can be "holistic". (mostly pseudoscience or junk science, especially from the USA, but plenty into Dr Myhill, Ozone treatment to name a few of their offerings).

But BPS is entrenched within the college/university medical schools and it is an ongoing battle. They have already belittled ME advocacy groups at their CME conferences. They are openly promoting LP for the treatment of ME/CFS.

I thought Australian college of GP's were bad but the small population of NZ and the influence, especially of the UK practice of BPS medicine is strong and being taught within the medical schools at an undergraduate level.

The public face/head of the College of GP's is very clear there is too much "long covid hysteria" and anxiety and I think this cardiologist is likely to be parroting him but will truly believe his BS.

edit:typos

 

Not by 26th March 2023 I'm afraid.

https://www.goodfellowunit.org/symp...ng-processr-and-chronic-and-mystery-illnesses

The Goodfellow Symposium
"Lightning Process® and chronic and mystery illnesses"
Speaker: Jenny Oliver

In partnership with —

• University of Auckland
• Mercy Ascot Hospital
• The Royal NZ College of General Practitioners
• The Royal NZ College of Urgent Care
• Australasian Society of Lifestyle Medicine

Sigh.

 

NZ GP education podcast with focus on young people. About 40 mins. Apparently it's been edited down to that length so it's not as comprehensive as it could have been, much to the disappointment of the speakers.

Still, the podcast is well done overall despite some gaps caused by the editing. At any rate, the main function of the podcast is to encourage GPs to take their patients seriously, advocate for them to get access to any support services they're entitled to, and to make use of sources like NZ Health Pathways & patient orgs, the CDC, etc. for more comprehensive information when treating a pwME. The podcast achieves this well, I think - or at least I hope it has this effect on any listening doctors. The challenge may be to get GPs to listen to it in the first place.

I think teenager Noah's testimony on how the disease affects his life will resonate with younger members here, it's very moving.

His mother Rose puts into words some of the emotions and challenges parents of ill children experience. Those of you who are parents may recognise some of these.

The GP Cathy's sections appear particularly truncated to me but hopefully listeners click through on the ME Awareness link on the page because there they can find a recording of a previous, more comprehensive presentation by Cathy and also a copy of an excellent NZ Doctor article she and Rose co-authored.

There are direct links to the different sections of the podcast on the webpage.

https://www.goodfellowunit.org/podcast/myalgic-encephalomyelitiscfs

 

Hi
I quite like the following single sentence that states what researchers are finding in ME/CFS. I think it has been suggested here before, or did it come from Emerge Australia?. Anyway, this is what I am referring to ...

I have a couple of questions related to this statement:
A. Would you agree that this statement provides a good up-to-date summary of what the current findings of research show?

B. What research papers would you suggest are used to provide evidence to each of the findings? Ones that senior physicians in NZ would respect and find good information (if they bothered to read them).

These papers have been suggested to me:
1. Re "abnormal physiological response to exercise"

• Moore G, et al (2023) Medicina, 59(3), 571; Recovery from exercise in persons with ME/CFS https://www.mdpi.com/1648-9144/59/3/571

2. Re "altered immune function"

• ?

3. Re "changes in the bacteria in the gut"

• NIH News Release, (2023). Studies find that microbiome changes may be a signature for ME/CFS. https://www.nih.gov/news-events/news-releases/studies-find-microbiome-changes-may-be-signature-mecfs

4. Re "impaired energy production at a cellular level"

• Cara Tomas, et al (2020). The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0231136#sec014

.
These have been suggested as good general articles for sharing with a NZ audience. Would you agree?

• Sweetman E, et al. (2019). Current Research Provides Insight into the Biological Basis and Diagnostic Potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Diagnostics (Basel). Jul 10;9(3):73. doi: 10.3390/diagnostics9030073. PMID: 31295930; PMCID: PMC6787691. https://www.mdpi.com/2075-4418/9/3/73
  
• Marshall-Gradisnik, S., & Eaton-Fitch, N. (2022). Understanding myalgic encephalomyelitis. Science, 377(6611), 1150–1151. https://www.science.org/doi/10.1126/science.abo1261

 

Technically speaking the sentence is correct. No claim of causality is made and researchers have indeed identified all these things, plus many more. However, this doesn't mean the findings are all solid. Nor does it mean they're of any practical consequence. For example, the gut bacteria findings are pretty non-specific and nobody knows what they mean let alone how or even if they should be treated. On the other hand the sentence doesn't include altered autonomic function which has somewhat better evidence and can to some degree be treated.

Answers to your questions depend a little on what you're trying to achieve. Reading between the lines - and I could be completely up the pole here - you're wanting to convince some 'senior NZ physicians' (whatever that means?) that ME should be treated and managed as a biomedical rather than a psychosomatic illness.

In that context I would primarily focus on the "abnormal physiological response to exertion" aspect and back this up with a combination of papers. The Moore et al paper looks good (on a quick skim) but it's about subjective experience of PEM so it would need to be supported by another paper highlighting the non-fakeable findings from the repeat CPETs. A third addition could be a paper about the cognitive deterioration after exertion. I think taken together they make a good case.

For the other claims I don't think it's worth going into them individually as individually none of the studies are strong. It makes more sense to just include a recent broad review - which would list all those findings anyway - to make the point that there are a lot of abnormal findings even if most of them remain under-researched.

Not sure what the best review for this purpose would be.

Looking back at the thread for Sweetman et al, I seem to have thought that the review itself was reasonably ok - but that was 4 years ago - but that the abstract was ambiguously worded. Which is a problem when so many people just skim the abstract. On the other hand it being an Otago paper may cause some positive nostalgia in NZ physicians leading them to look upon ME with more sympathetic eyes? Ok, maybe not.

Looking back at the thread for the Gradisnik-Fitch paper, it doesn't look like I registered/read the paper when it came out but it didn't fare well with other members. I don't know if that makes it any worse than other reviews, I don't recall any particularly wonderful ones. It's probably a case of picking the least bad one, preferably with an author who enjoys name recognition and respect in senior physician circles.

If the aim is to save pwME from being treated with behavioural and psychological 'therapies' I would additionally highlight the NICE evidence review showing that, irrespective of the ultimate cause of ME, those therapies just don't have good evidence despite numerous trials attempting to prove effectiveness. The exception being the LP where there's little research so we have to fall back on a combination of logic - there's no known mechanism by which it could stop the abnormal response to exertion - together with the precautionary principle - patients reporting harm from overexerting themselves.

In summary, if I had the spoons to search them out - which I don't, this post has taken me all day to construct already - I would look for:

• a recent paper highlighting the non-fakeable findings from the repeat CPETs, either a review or a solid study with a solid literature review section
• a paper about the cognitive deterioration after exertion challenge (dimly recall there's at least one such study)
• a broad review of ME research findings to date, ideally by a well-known and respected author
• the relevant sections of the NICE evidence review & guidelines, or a review paper summarising them (can't recall if there is one)

Maybe somebody else can help out here?

 

FWIW. The NZ Ministry of Health is giving the public the opportunity to submit ideas for improving our health system (though given the chronic health underfunding issues I suspect it's not likely anything costing money will be taken up).

https://tatou.health.govt.nz/

There are several topics. Kiwis can register their support for and/or comment on the listed ideas, or propose their own (all actions require creating a login). It's not clear to me how long each topic will remain open.

Currently one topic is "The future of the health system". Two ideas related to ME have been posted at the time of writing.

https://tatou.health.govt.nz/the-future-of-the-health-system

Another topic is "Achieving pae ora (healthy futures)". There are two ideas regarding CFS.

https://tatou.health.govt.nz/achieving-pae-ora-healthy-future

Another relevant topic is "Transforming the health system". There are no ME related ideas for this one yet.

https://tatou.health.govt.nz/transforming-the-health-system

I may have missed some ME/CFS related ideas because I've only looked at the headlines and some of them aren't very informative. Something to keep in mind for anyone submitting their own idea.

Some of the ideas posted may not be formulated perfectly but I think it's still worthwhile to give them a high rating - they're all variations on the theme that ME/CFS has been ignored for too long and the system has to do better by us - and maybe to make some suggestions how the ideas could be further refined in the comments. All ideas and comments go on the public record. So another small way of making sure they can't turn around and say 'we didn't know there was a problem'