Sly Saint
Senior Member (Voting Rights)
Long-COVID is the elephant in the room, say physiotherapists
https://pnz.org.nz/Story?Action=View&Story_id=4908
https://pnz.org.nz/Story?Action=View&Story_id=4908
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News from Aotearoa/New Zealand and the Pacific Islands
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rvallee
Senior Member (Voting Rights)
There's really no evidence for this so-called breathing pattern dysfunction, it seems basically to play the role of CSS: to point at something, anything, but are they really good at this? You know, since the entire profession was completely oblivious to it until very recently when a patient movement forced the issue into the limelight and the issue happened in a massive explosion instead of a slow constant burn? This is far from new, only the context has changed.
Credit where due: physiotherapy is clearly way ahead of, well, literally the rest of medicine. So there's that. But people don't need exercises, they need support and sick leave and a bunch of other stuff, none of which requires multiple 1-to-1 sessions for several weeks or months. Everything else is yet to be done and is all about research, supplying services because that's what those services supply is not a smart strategy and it absolutely does not scale, in addition to being largely performative.
Otherwise what will simply happen is GPs will be happy to send patients off and never hear from them again, content that they did their job when all they did is kick the can and close the door. You know, the thing that failed miserably and led us right here.
Has there been research showing this? It seems to me logical that people who have been suffering from a disease that affects lungs and oxygenation of blood might end up with breathing pattern problems.
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Don't think that sentence was particularly helpful.
hibiscuswahine
Senior Member (Voting Rights)
There is some usefulness to breathing exercises for respiratory rehab for the effects of covid. I think they do not understand the research coming out for ME/POTS/OI where the breathing and hypocapnia is not due to hyperventilation (physio’s are big on HV syndrome, and psych, note the word trigger and physiological response) but often the pattern developing while asleep is due to deep abdominal (diaphragmatic) breathing with prolonged exhalation c.f inhalation not the confined to chest and use of accessory muscles seen in HV. Air hunger is not from anxiety/hyperventilation even though can feel this way as we have been culturally trained to ascribe that to this and everyone tells us to BREATHE (yes thank-you, I know how and when to use this) It is due to oxidative stress.
The deconditioning/weakness…..This trope that we spend the whole day in bed is ridiculous and has been scientifically disproved. This reads like a BPS mindset but they are reading World Physio and Physio’s for ME information and want to be relevant but not quite got it. Most of us are trying to get to the toilet, bathe, order and prepare food and stay hydrated while often desperately seeking support and treatment. No mention of PEM specifically, though some suggestion they are aware.
If physios really wanted to help us they need to step up big time. We have to pay for physio in NZ, very hard to get publicly funded community physiotherapy to come to our home and do passive exercises to preserve our musculature and help guide us with less strenuous strengthening exercises. We can only get it if we are a major fall risk (which I nearly applied for in my recent relapse). If I played sport (yeah right) and injured myself or had a muscle problem, I could rock up to the physio and they would sign one off for free ACC funded physio (or part payment) and have this multiple times in a year for life. Getting a GP to sign off, very difficult as ME is a chronic illness not covered by ACC. I can’t see anything changing for many years unless the government fund more physiotherapists with good pay rates to take them away from their lucrative private practices.
The deconditioning/weakness…..This trope that we spend the whole day in bed is ridiculous and has been scientifically disproved. This reads like a BPS mindset but they are reading World Physio and Physio’s for ME information and want to be relevant but not quite got it. Most of us are trying to get to the toilet, bathe, order and prepare food and stay hydrated while often desperately seeking support and treatment. No mention of PEM specifically, though some suggestion they are aware.
If physios really wanted to help us they need to step up big time. We have to pay for physio in NZ, very hard to get publicly funded community physiotherapy to come to our home and do passive exercises to preserve our musculature and help guide us with less strenuous strengthening exercises. We can only get it if we are a major fall risk (which I nearly applied for in my recent relapse). If I played sport (yeah right) and injured myself or had a muscle problem, I could rock up to the physio and they would sign one off for free ACC funded physio (or part payment) and have this multiple times in a year for life. Getting a GP to sign off, very difficult as ME is a chronic illness not covered by ACC. I can’t see anything changing for many years unless the government fund more physiotherapists with good pay rates to take them away from their lucrative private practices.
Jonathan Edwards
Senior Member (Voting Rights)
I am sceptical. The involuntary nervous system is good at adjusting in subtle ays to demands. If the demands change breathing is likely to change to best advantage.
As I see it all this stuff about treating breathing patterns is the same mistake as for ME 0 confusing the means with the ends. PWME want to be able to do more but doing more does not get them there. People with bad lungs would like more oxygen. Changing their breathing pattern is not going to do anything to the absence of lung that makes oxygen a problem.
Physios will believe they have an answer for anything you ask. Just like with my recent hand operation. It Ould be extraordinarily difficult to do a study that convincingly shoed benefit from breathing exercises. There may be some exceptions like postural drainage for bronchiectasis and maybe advice on aborting panic attacks but those are not about regular breathing patterns.
rvallee
Senior Member (Voting Rights)
I'm not even sure what dysfunctional breathing pattern even means, it's a very simple system unless something's physically wrong. I see lots of things about breathing exercises, belly-breathing, singing, humming, deep breathing, etc. Just seems very vague and likely to be similar to us: the problem can't be seen, it usually goes away with time, meanwhile people do stuff that can be attributed to help, but is just as likely to be that time helped, and when it doesn't, welp...
What I see basically is shortness of breath, at rest or following exertion, being attributed to this "not breathing properly", whatever it means. I'm sure it's a thing in some specific circumstances, just doesn't seem to apply here, as it's overused as THE explanation, kind of like some use CSS or FND for us. Catch-all explanations like this are always suspicious.
It is literally the first thing humans do after being born, and go right on doing, without any training by experts.
But what is it that they have to offer us at this point?
hibiscuswahine
Senior Member (Voting Rights)
For ME, probably not a lot, I can look up strengthening movements on the internet and apply. I think OT’s are more helpful in getting modifications and mobility aids from public services. For very severe pwME passive movement can be helpful if done with care.
A private physio recently did a zoom presentation with chat on our national FB support group. It was quite clear he had done chronic pain management courses and thought our myalgia/arthralgia was from lack of use. He didn’t have a lot to offer as you had to consult him. I have noticed newly diagnosed pwME/Long covid seem keen to get CPET’s from exercise physiologists and the physio supported this but then some have had major relapses so these HP’s don’t understands PEM.
Long covid may have some additional realms that physio could support especially respiratory. Covid induced POTS/OI may benefit from help strengthening muscles in lower limbs to stop pooling if other measures like compression stockings don’t work.
hibiscuswahine
Senior Member (Voting Rights)
Preprint of a paper by Data Scientists at the the University of Canterbury, has combined the small international datasets for gene methylation of ME/CFS so now n=207 and examined relationships. Maths is over my head but good review of current understanding of changes to different epigenetic codes
https://www.s4me.info/threads/preprint-a-cartography-of-differential-gene-methylation-in-me-cfs-different-network-roles-in-the-protein-protein-interactions-2021-wilberforce.23949/
https://www.s4me.info/threads/preprint-a-cartography-of-differential-gene-methylation-in-me-cfs-different-network-roles-in-the-protein-protein-interactions-2021-wilberforce.23949/
An individual has posted a petition on change org with the request to...
Please support this petition to the NZ Government and the NZ Human Rights Commission, to consider giving vaccine exemptions to this [ME/CFS] community of around 25,000 New Zealanders.
Link to petition: https://www.change.org/p/the-new-ze...tain-vaccine-exemptions-despite-expert-advice
Full content of petition: Thousands of NZ ME/CFS sufferers unable to obtain Vaccine exemptions despite expert advice
Please support this petition to the NZ Government and the NZ Human Rights Commission, to consider giving vaccine exemptions to this [ME/CFS] community of around 25,000 New Zealanders.
Link to petition: https://www.change.org/p/the-new-ze...tain-vaccine-exemptions-despite-expert-advice
Full content of petition: Thousands of NZ ME/CFS sufferers unable to obtain Vaccine exemptions despite expert advice
Forgot to say I had feedback some concerns with the wording and desired result.
I note that the petitioner says 25% have a reaction to the vaccine. That's an unhelpful figure unless they can specify just how bad and long lasting that reaction is, and whether it's significantly worse than in the general population.
I have a lot of sympathy with the small minority of individuals who have had a really bad long lasting reaction to the vaccine, but that's not a good reason to exempt all individuals with ME/CFS from vaccination when it hasn't been compared scientifically with the bad long lasting reactions to the infection in those who are unvaccinated, up to and including death.
Unless it can be shown that
a) pwME have an unusually high prevalence of severe and long lasting reaction to the vaccine
b) that pwME are significantly more likely to have a bad reaction to the vaccine than to the virus when unvaccinated
Then there is no justification for ME on its own to be classed as a reason for exemption.
I dont think there is evidence for either a or b, let alone both.
It is worthy of note that, even with the possibly milder Omicron variant, the majority of people in intensive care and dying from Covid in the UK are young, healthy and unvaccinated. Given how infectious Omicron is, and the fact that even in New Zealand with its relative isolation and border controls, Omicron or some other variant is likely to become prevalent.
I hope pwME in New Zealand who follow this advice not to get vaccinated don't as a result end up in intensive care with Omicron. I think Warren Tate and the person who started this petition are being irresponsible.
I have a lot of sympathy with the small minority of individuals who have had a really bad long lasting reaction to the vaccine, but that's not a good reason to exempt all individuals with ME/CFS from vaccination when it hasn't been compared scientifically with the bad long lasting reactions to the infection in those who are unvaccinated, up to and including death.
Unless it can be shown that
a) pwME have an unusually high prevalence of severe and long lasting reaction to the vaccine
b) that pwME are significantly more likely to have a bad reaction to the vaccine than to the virus when unvaccinated
Then there is no justification for ME on its own to be classed as a reason for exemption.
I dont think there is evidence for either a or b, let alone both.
It is worthy of note that, even with the possibly milder Omicron variant, the majority of people in intensive care and dying from Covid in the UK are young, healthy and unvaccinated. Given how infectious Omicron is, and the fact that even in New Zealand with its relative isolation and border controls, Omicron or some other variant is likely to become prevalent.
I hope pwME in New Zealand who follow this advice not to get vaccinated don't as a result end up in intensive care with Omicron. I think Warren Tate and the person who started this petition are being irresponsible.
Ravn
Senior Member (Voting Rights)
There are two issues mixed up in this petition.
1) It is extraordinarily difficult to get a vaccine exemption even after a very bad reaction to the first vaccine. This could - and imo should - be looked at. Though I don't know how loosening the criteria could be made to work in practice. There are many people with other conditions, e.g. autoimmune diseases, worried about the effect of the vaccine, too, it's hard to know where to draw the line. And one of the main reasons the criteria are as tight as they are is that (healthy) anti-vaxxers have been trying very hard to abuse the exemption system, spoiling it for everyone else.
2) The petition asks for a blanket exemption for all pwME. This part I disagree with. Since delta, and even more so since omicron, there's a very high risk of all of us getting infected sooner or later. So either you intend to escape infection by not going out at all, in which case vaccine passes and exemptions are irrelevant.* Or you do want to go out to places requiring a vaccine pass. In which case I can't help wondering if it's the very same people who have problems after the vaccine who would also be the people most susceptible to long Covid on top of their ME if - when - they get infected. Difficult to study this, obviously. Whichever way you look at it it's a damned if you do and damned if you don't situation. But a blanket exemption isn't the solution.
Additionally, getting a blanket exemption for pwME could have unintended consequences. The anti-vaxxers might start fake-claiming ME, just like they're already fake-claiming having a condition eligible for mask exemptions. With masks we already have a situation where everyone asserting to have a mask exemption is looked upon as a likely fraudster which is bad news for the people who genuinely need a mask exemption. We don't need (even more of) that sort of thing for ME, we have enough credibility problems as it is.
*For those unfamiliar with the vaccination mandate in NZ, there are broadly speaking two situations where a person must be vaccinated. One, to work in certain jobs where the risk of contracting/spreading the virus is high. Two, to get issued a vaccine pass which gives access to a lot of services like retail and hospitality (but you don't need a vaccine pass for essential services like supermarkets and healthcare).
Great article from Dr Sarah Rhodes, a cardio-respiratory physiotherapist and lecturer at the University of Otago’s School of Physiotherapy, and Dr Margot Skinner, of the School of Physiotherapy at the University of Otago, writing for Newsroom.
Urgent funding needed for Long Covid
With an anticipated surge of people with long Covid, health system funding and resourcing is needed fast to ensure those who experience it are supported, argue Dr Sarah Rhodes and Dr Margot Skinner
https://www.newsroom.co.nz/ideasroom/urgent-funding-needed-for-long-covid
They outline:
Urgent funding needed for Long Covid
With an anticipated surge of people with long Covid, health system funding and resourcing is needed fast to ensure those who experience it are supported, argue Dr Sarah Rhodes and Dr Margot Skinner
https://www.newsroom.co.nz/ideasroom/urgent-funding-needed-for-long-covid
They outline:
- Epidemiology of long COVID - "In Aotearoa New Zealand there are more than 9,000 people who have or have had Covid-19, which means more than 3,000 may experience persistent symptoms. This number will continue to rise."
- Clinical manifestations – key symptoms including extreme fatigue, 'post exertional malaise', POTS, dysfunctional breathing patterns...
- Treatment - "At present, most treatment options are focused on symptom management."
- Role of Physiotherapy - "Physiotherapists can support people with symptoms of long Covid by helping them to understand the importance of limiting activity..."
- Return to work - "many are unable to resume fulltime work and previous physical activity levels even after 12 months"
- Vaccination
- Their key messages:
- Get vaccinated to reduce your risk and the likely impact of long Covid.
- There is a clear need for Ministry of Health funding to provide clear and equitable access to health pathways and long Covid clinics.
- Health professionals need to collaborate in the development of a multi-professional long Covid management programme, which should include a Covid helpline.
- Those with experience of long Covid are the experts and can play a vital role in working with health professionals to advise on symptom management.
Ravn
Senior Member (Voting Rights)
Overall a good piece. Except it's yet another article that adopts ME terms and concepts like PEM without acknowledging this with a single word. Every time this happens I wonder if that's intentional or ignorant.
On one level I understand the LC community not wanting to make the link to ME for fear of being discounted and stigmatised even before they've had a chance to state their own case. Valid concern, sadly.
On another level it's beginning to feel like a form of cultural appropriation. Maybe not so much the identity aspect of cultural appropriation but certainly the bits relating to taking something from a minority group and giving no recognition, no respect and no tangible or intangible benefits back to the minority group.
Subtropical Island
Senior Member (Voting Rights)
Article on RNZ:
https://www.rnz.co.nz/news/on-the-inside/459201/what-life-is-like-with-a-post-viral-illness
What life is like with a post-viral illness - Michael Hall
Good article of his experience. Does cover the essential larger issues and eventually mention ME/CFS (but not so soon that prejudiced people disregard it).
https://www.rnz.co.nz/news/on-the-inside/459201/what-life-is-like-with-a-post-viral-illness
What life is like with a post-viral illness - Michael Hall
Good article of his experience. Does cover the essential larger issues and eventually mention ME/CFS (but not so soon that prejudiced people disregard it).
Ravn
Senior Member (Voting Rights)
Yes, clever strategy to not use the term ME/CFS until after you've (hopefully) got readers on your side.
But oh my oh my, sometimes the task of educating our health professionals feels like looking up at Mount Everest and wondering how on earth to get anywhere near the summit, and that without the fitness of a Hillary or Norgay to draw on.
RNZ article said: