News from Aotearoa/New Zealand and the Pacific Islands

Stuff: Woman with long Covid wants physiotherapy to be more accessible for all

With the goal to avoid ‘boom and bust cycles’ and an eventual return to exercise, Victory said physiotherapy helped her pace herself.
Slowly, over months, she was guided through moving from a walk, to a brisk walk, to a slow jog.
In January – after getting her physios’ sign-off – Victory did a 10-kilometre run.
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Seventeen months on from getting Covid, Victory feels about “80%”.
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A pretty good 80% and good to see a recovery trajectory :)

Massey University senior lecturer Dr Lynette Hodges said a person’s fitness doesn’t just go away when they get long Covid or ME/CFS: something is happening to their physiological system.
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Linking to —
Statement about ME/CFS and Exercise: Prepared for Health Care Providers, Welfare Assessors, and Insurance Assessors
by Dr Lynette Hodges, 2nd September 2021
 
Tapanui Flu
A thread about the outbreak of ME/CFS-like illness in New Zealand. Interesting to see the assertion that Otago and specifically the small town of Otago was not the only place that had an outbreak, and that there were outbreaks across New Zealand around 1983.
 
Hutan said:
The interview closed with a comment about how Gez Medinger is doing. Altmann noted that previously Gez had been a dedicated marathon runner, and now, when he is doing publicity events for the Long Covid Handbook etc, he will take breaks to sit somewhere quiet in order to get through it. Altmann suggests that Kim, the presenter, should get him on the programme.
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Gez Medinger will be interviewed on RNZ (Kim Hill's Saturday Morning) tomorrow.
 
On Gez: I didn't take notes.
I thought it started rather badly, with the suggestion that Long covid hits active people preferentially, people who have pushed themselves and worked very hard. Gez referred to a survey he did with 2000 people, noting that the vast majority of them had been active and stressed. But, before he got Long covid, he ran marathons and did You Tube videos about running. I'm thinking his sample selection was rather biased. I'm pretty sure the active high achieving people are the ones who tend to be loud about getting Long covid. They are used to being listened to, and have high achieving friends to help them. Whereas you don't hear nearly as much from the people who just plodded through life. So, it's easy to get a skewed impression. I mean, who knows, the idea might be correct, but making assumptions about risk factors based on who ends up in interviews could easily lead to research and policy being based on incorrect ideas.

That led on to a suggestion that people get stuck in a fight or flight situation, which revs upon the immune system. So, was suggested that treatments need to calm the immune system down.

Anyway, there was good stuff, probably mostly good stuff. Gez was particularly good on exercise not being curative, and making some people worse - he specifically mentioned graded exercise therapy as not being good. PEM was explained, the overlap with ME/CFS. It was mentioned that there is no cure, although acupuncture and other things got mentioned as things that help some people.

I guess I would have got a lot things wrong if I had been interviewed a couple or a few years into my illness, and probably would even now, so it's a bit harsh to criticise someone who sticks their neck out and turns up to be interviewed. On balance, I think it was a helpful interview.
 
I agree @Hutan. I thought there was a little too much quarter given with anxiety and mind-body, and it sounded as if "nervous system" was promoted above immune pathology at times, whereas I think the evidence points to the inverse (albeit allowing for feedback/augmentation). But overall I felt the interview was helpful. Completely agree about the skewed sample of fit people, for the reasons you give. When I look at our local FB group, yes there are plenty of people who ranged from healthy/fit to elite athletes, but there were also people who were clearly not that demographic at all.

However, in terms of public education I hope that hearing the experience that many fit people had mild disease, went immediately back to exercise and then came a cropper, strongly counters the BPS fantasy of deconditioning and abnormal illness beliefs.
 
Hutan said:
I'm pretty sure the active high achieving people are the ones who tend to be loud about getting Long covid. They are used to being listened to, and have high achieving friends to help them. Whereas you don't hear nearly as much from the people who just plodded through life. So, it's easy to get a skewed impression. I mean, who knows, the idea might be correct, but making assumptions about risk factors based on who ends up in interviews could easily lead to research and policy being based on incorrect ideas.
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SNT Gatchaman said:
However, in terms of public education I hope that hearing the experience that many fit people had mild disease, went immediately back to exercise and then came a cropper, strongly counters the BPS fantasy of deconditioning and abnormal illness beliefs.
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I think being told repeatedly since almost the start of the pandemic that this doesn't happen, and if it does it's not to "healthy, active, fit" people makes some want to make it clear that it absolutely does. I guess for many it's a new experience of not being believed, and even those of us with clear evidence of our active lifestyle are being told we are/have been lazy and inactive based on the logic that otherwise we wouldn't have got ME.

Only in the last week I've been told ME is caused by lack of motivation and low sense of accomplishment (and then we just give up on life > manifests as fatigue and if the person had know of the concept of deconditioned I'm sure they'd have thrown that in..). Of course I then pointed out many (I'd say most) have motivations to do something. And many have had what would otherwise be called accomplished life before getting ill. Becoming ill as a teen I wouldn't say I have, but I'm one of the lucky ones that have been able to get an education, and my level of accomplishment following this would not be called "low". I'm still ill.

Yes, for some of the more inactive people I know, I've wondered how they would notice ME in their daily life. Especially if they got a milder grade like me. My fitbit tells me I've averaged ~4000 steps the last year, the year before that it was ~5000. I think plenty of healthy albeit inactive people can have this level of activity.
 
RoseE said:
Good article published on Thursday, 3rd August by Alice O'Connell
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That's quite a problematic article reflecting an even more problematic medical system. First there is a "brilliant" cardiologist who believes that Long covid is the same as POTS, and can be fixed
When the cardiologist asked her what she thought might be going on, Sarah said: “Well, everything I’ve looked at tells me this is POTS (Postural Orthostatic Tachycardia Syndrome).”
“She said I was bang on, and at that point I burst into tears. She said, ‘no no no, we’re not going down that track. Let’s get you on to a program for getting this under control and work on it from there.’”

In a follow-up letter, she wrote to Sarah: “The first thing is to recognise this is a real phenomenon and that the changes that you are feeling result of sudden deconditioning from a state of previous high cardiovascular fitness. Alleviating the anxiety out of the algorithm is important and I would recommend reading more about pathophysiological changes.” She gave other recommendations (including compression gear, which took 11 months to turn up), salt-volume loading, taking electrolytes, and a regime to regenerate her cardiovascular system (all without doing any upright exercise).
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So, Sarah has been following these recommendations for over 11 months and has the brilliant cardiologist got things under control? No.
But, like all Long Covid sufferers – many of whom also suffer from POTS and dysautonomia, which Sarah was also diagnosed with – Sarah is discovering just how ‘long’ that recovery period for Long Covid is.
She still finds it difficult to stand. She struggles with her heart rate and high blood pressure.
....“I’m alive, but I’m not living,” she says. “I’m one of the missing millions”.
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It's not just the brilliant cardiologist, there are wonderful physiotherapists and occupational therapists:
But despite the incredible frustrations of her illness, Sarah is remarkably upbeat and positive. She’s worked with a wonderful physio and occupational therapist – as well as the brilliant cardiologist. She knows her recovery isn’t linear, but she is full of optimism for the future – and that she will make that Hawaii holiday soon.
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The last part of the article is mostly an advertisement for cardio-respiratory physiotherapists and completely unevidenced breathing exercises.
We spoke to Jen Mepham, a cardio-respiratory physiotherapist who was the Chairperson of the Physiotherapy New Zealand Cardio-respiratory special interest group throughout the pandemic. She is also a member of the expert advisory group for the Ministry of Health Long Covid Guidelines.
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Many people are also under the impression that there’s not a lot that can be done about Long Covid, but that’s where Jen – and other cardio-respiratory physios step in. A physio who is targeting your lungs and respiratory system, through breathing exercises can be transformative. You’re not going to get overnight results, but you will make gains over time. A physio can also support assessment and management strategies for POTS and PEM, including return to work and childcare.
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And, she would of course advise you to talk to your GP about getting a referral to a cardio respiratory physiotherapist. “There are fantastic ones within Te Whatu Ora who understand breathing exercises and Long Covid. For those who can afford it, there are physiotherapists in the private sector too.”
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In a health care system so cash-strapped that people aren't getting treated in a timely way for basic things were the treatment actually helps, money is being wasted on unevidenced breathing exercises. And a whole lot of people with Long Covid will be spending money and energy and time on ineffective therapies, and not yet understanding that actually there are no treatments.
 
I know a medical professional who is doing the 2 hour Lightning Process Training for health professionals with Jenny Oliver at the GPCME South on Thursday, 10th Aug so that they are informed about what is being offered to people with ME/CFS.

Can anyone recommend any articles /threads that would be good background reading to the attendee to help them participate in any discussion at the training workshop? Or at least attend with their eyes wide open.

If they felt comfortable to do so, what would be good questions for them to raise about the evidence and safety of this programme being offered to anyone, but particularly those with ME/CFS ?
Have questions to LP trainers been discussed anywhere in this forum? I haven't spotted it yet.
(I have found the 'Lightning Process - discussion thread' but haven't read much of the 11 pages. https://s4me.info/threads/lightning-process-discussion-thread.5809 )

Possible questions to be asked internally or at the training...
  • Are patients medically assessed prior to participating in the LP programme to determine risks of their participation?
  • For pwME, what advice is provided to ensure that they do not trigger post-exertional malaise and cause a long-term reduction in their functionality through implementing the techniques taught on the programme?
  • What mechanism does the trainer consider generates the change in physiological symptoms? What evidence is there for this?
  • For people who do not obtain improved health as a result of the LP programme, or worse yet, get worse, what support is offered to them to rebalance their mental health after being told that if they just believe they have control of their symptoms (through the techniques)?
  • ?

*****
Discussion of this question has been moved to:
Needed: concise(!) resources to brief people on problems with LP
 
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Ravn said:
A strong oral submission by ANZMES (starts at 39:20).

Just a pity the health officials got speaking time afterwards allowing them to list all the services pwME are theorectically entitled to without acknowledging that in reality this isn't happening on the ground, as pointed out repeatedly by Fiona for ANZMES. Hopefully the select committee members saw through that
Haven't been able to find the video outside of FB
Code: 
https://www.facebook.com/hescnz/videos/1872174863153510
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The Select Committee has made its recommendations. Probably as good as could have been hoped for. Question is, will it lead to meaningful action. An earlier petition years ago also won the support of the Select Committee but no change was ever made as a result
Select Committee said:
Our response to the petition

We commend the petitioner for highlighting this important matter. We thank ANZMES for its advocacy on behalf of people with ME/CFS and their families, and for its work to educate and inform others about the condition.

We note the petitioner’s request to reclassify ME/CFS from a chronic illness to a disability to enable ME/CFS patients to be supported under the existing framework for disability support services. We understand that ME/CFS meets the Government’s definition of a disability. The United Nations Convention on the Rights of Persons with Disabilities also recognises it as a disability. We acknowledge that the health system does not require conditions to be classified as a disability to enable access to services. However, we understand that the eligibility criteria differ between Whaikaha and Te Whatu Ora-funded services, resulting in inequitable access. We also acknowledge that recognising ME/CFS as a disability for the purposes of disability support services would legitimise the condition and provide for the protection of rights as a disabled person.

We note that Whaikaha has not yet made any decisions about eligibility criteria. We agree that having ME/CFS classified within Whaikaha’s definition of a disability would validate people’s experiences and make them feel heard. We therefore encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services.

The petitioner requests that services be improved for people with ME/CFS and suggests a range of ways in which this could be achieved. We were pleased to hear that Te Whatu Ora already has a unique clinical code for ME/CFS and that it is working to improve support for people with long-term chronic conditions.

We acknowledge the petitioner’s request for certain medications to be subsidised, including an unfunded prescription drug. We respect PHARMAC’s independence and impartiality and do not believe it is Parliament’s role to influence which medicines should be funded. Although PHARMAC is ultimately accountable to the Minister of Health, making decisions independently from Government is important for the organisation to be able to function effectively.
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Full Select Committee report can be downloaded here
 
Hutan said:
Martin's technology looks really interesting. It will be good to see measurements of deformability of red blood cells specifically for Long Covid cohorts clearly from 6 months or a year after infection and compared with cells from post-Covid healthy people.
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Anna Brooks has invited Martin Krater to speak at this weekend's flow cytology conference in Queenstown. Also doing a lecture at University of Auckland on Friday (not open access I believe).

Anna Brooks on Twitter said:
Looking forward to hosting @KraterMartin at @ScienceUoA @AucklandUni to visit my lab at @AucklandCyto to discuss cytometry tools for #LongCovid & #MECFS research. Then next stop Queenstown to present @ our Australasian @ACScytometry conference #ACS2023
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Press release:

ANZMES welcomes HSC recommendations for improved access to disability services for people with ME/CFS
Home › Health

Contributor:
Fuseworks MediaFuseworks Media

Tuesday, 22 August, 2023 - 12:14

ANZMES, the National Advisory on Myalgic Encephalomyelitis (ME), has welcomed the Health Select Committee’s (HSC) response to its petition delivered in September 2022, calling on the Government to reclassify ME as a disability.

The Health Select Committee presented its report to parliament on 17th August 2023, sending a strong message acknowledging ANZMES petition to reclassify ME - also known as Chronic Fatigue Syndrome (CFS) - as a disability with the recommendation that eligibility criteria for disability services be amended.

The 10 page HSC Report recommends that the Government take note stating "we understand that ME/CFS meets the Government’s definition of a disability. We therefore, encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services."

Continues at:
http://www.voxy.co.nz/health/5/420846

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A brief item on Radio New Zealand
https://www.rnz.co.nz/national/prog...018904918/nz-s-only-long-covid-clinic-to-shut
The only publicly funded Long Covid clinic in the country will shut up shop after a short, five-month run.
A patient of the Christchurch-based pilot clinic since it opened in May says it has helped her make huge strides in recovery.
But with the clinic closing at the end of September, she has been discharged and is worried that will be the end of her progress.
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It has a GP saying that they are seeing a lot of Long Covid patients and they don't know what to do with them and that they aren't funded to look after them. (There is a capitation fee that GPs get, so they don't want high maintenance patients.). The national health agency is saying that it won't be providing any specialist services and that GPs can look after people with Long Covid.

On the other hand, there's the question of how much use any specialist service is, other than allowing GPs to wash their hands of time-consuming patients and making the patients feel as though someone cares. The Christchurch service had occupational therapists and respiratory physiotherapists and sounds to have been focused on retraining people how to breathe.

So, the absence of largely ineffective clinics isn't necessarily a bad thing, as it may help make both patients and GPs to be louder about the problem of no useful treatment.
 
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My UK LC is also focusing on breathing. Every single patient referred to the breathing physio has been diagnosed with disordered breathing. I have already been through this in the 1990s so I played along for a while. Then I disputed it and showed I knew how to do the exercises already.and could draw a breath. Examination
 
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