Online workshop: Treating Long Covid, 24th and 25th April

Andy

Andy

Retired committee member
What you need to know and what you can do in clinical practice.

Long Covid is a devastating consequence of Covid-19 (SARS -CoV2) infection. It's estimated that between 10-30% of individuals infected will go on to have symptoms lasting > 12 weeks. Symptoms of fatigue, chest pain, shortness of breath and brain fog feature predominantly. These symptoms may lead individuals to seek help from rehabilitation professionals. It's imperative that we're informed about Long Covid, aware of red flags, and science based protocols of treatment.

This course will give you the basic knowledge and skills to address some of the symptoms of Long Covid. It will also serve as a platform to highlight our scope of practice as rehab specialists. This International collaboration brings together physiotherapists who have worked in the field of Chronic Fatigue, ME, breathing pattern disorders and Breathing dysfunction for over 30 years and now more recently Long Covid.
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Cost $465 NZ, 'early bird' $425 NZ (approx £236 / £216)

https://www.bradcliff.com/event/treating-long-covid
 
Looks like an expensive 2 day course for physiotherapists / physical therapists, run by a commercial organisation called 'Breathing Works' with a trademarked therapy called the 'BradCliff Breathing Method'.

The course focuses almost entirely on breathing and relaxation methods, plus a lecture on PEM by Prof. Todd Davenport.

I have no idea what the BradCliff Breathing Method is. I wonder whether @PhysiosforME can enlighten us.
 
I don't know what the BradCliff breathing method is exactly but Jessica has really embraced the learning from the ME world to how she works with people with Long Covid. She's become an advocate for pacing and PEM which is always good to see. She did ask us if we wanted to be involved in the course but we have a few other things on our plate as were focusing on the NICE guidance being released (which is now obviously delayed :( )

We are seeing a lot of people with Long Covid with breathing pattern disorders which is fascinating especially trying to understand why?

I'm now intrigued to know more and also to see if these breathing pattern disorders exist in people with ME - just look at the number of people with ME with costochondritis for example.
If people with ME are working hard just to breathe then we need to look at that to help conserve energy. There is so much still to learn!!!!!!!!!!!!!!!!
 
Trish said:
Can you explain?
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We have heard from a lot of people with ME who have costochondritis (pain where the ribs attach onto the sternum) and people with Long Covid are reporting the same problem.

I don't think we are sure what the cause of costochondritis is in these cases but it might be that altered breathing patterns have affected the body's biomechanics causing inflammation of these small joints. I do know it is really painful as I have had it myself!

With ME being multi-systemic there are so many different things to consider! For me, it is just another reinforcement of the importance of taking an individualised approach to supporting people with ME; one person may have costochondritis and need advice about breathing patterns, another may have no problem at all in that area.
 
I find this quite worrying. It seems that if someone has an abnormal breathing pattern physios can just invent an explanation and 'treat' it off the top their heads based on whatever pseudo physiology they like.

People with LongCovid may have an unusual gas transfer problem that impedes oxygen transfer more than carbon dioxide. That is likely to lead to a situation where the drive to prevent hypoxia is dependent on what appears to be abnormal ventilation with hypocapnia. I have no idea whether or not this is the case but as far as I can see nor does anyone else. To treat this without understanding could lead to serious organ failure and death in some cases.

We are not allowed to interfere with people's health with drugs unless we have shown the safety and efficacy of the drugs.Why should physiotherapy be any different? Why should it be OK to invent half-baked ideas about physiology and apply them with treatments that are never assessed for efficacy or safety in an adequate way?

There is a general princilple in medicine that anything that can do a significant amount of good must also be considered capable of causing a significant amount of harm. The physio world in the past does not seem to have understood this. I think things need to change.
 
PhysiosforME said:
We have heard from a lot of people with ME who have costochondritis (pain where the ribs attach onto the sternum) and people with Long Covid are reporting the same problem.
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Are you sure this is costochondritis? My special interest as an academic rheumatologist was in connective tissue pathology and I am doubtful that there is such a thing. Cartilage has no blood supply so there isn't really such a thing as chondritis, only perichonritis and I have never seen any good evidence for people with pain around the sternum having that. I have always thought of costochondritis as one of those made up words left over from 'physical medicine' of the 1950s, like fibrositis. I suspect m people with prominent upper rib ends probably have a mild scoliosis due to leg length discrepancy but I don't think even that is reliably demonstrated.
 
PhysiosforME said:
just look at the number of people with ME with costochondritis
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I had that for many years (although I didn't know that was what it was called and my GP had no real explanation). Unbelievable constrictive feeling pain in most of my torso. I also had reccurrent chest pain (more on the right than the left) for which another GP just prescribed anti-biotics which made no difference.
 
Jonathan Edwards said:
I find this quite worrying. It seems that if someone has an abnormal breathing pattern physios can just invent an explanation and 'treat' it off the top their heads based on whatever pseudo physiology they like.

People with LongCovid may have an unusual gas transfer problem that impedes oxygen transfer more than carbon dioxide. That is likely to lead to a situation where the drive to prevent hypoxia is dependent on what appears to be abnormal ventilation with hypocapnia. I have no idea whether or not this is the case but as far as I can see nor does anyone else. To treat this without understanding could lead to serious organ failure and death in some cases.

We are not allowed to interfere with people's health with drugs unless we have shown the safety and efficacy of the drugs.Why should physiotherapy be any different? Why should it be OK to invent half-baked ideas about physiology and apply them with treatments that are never assessed for efficacy or safety in an adequate way?

There is a general princilple in medicine that anything that can do a significant amount of good must also be considered capable of causing a significant amount of harm. The physio world in the past does not seem to have understood this. I think things need to change.
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These are all very good points - and as I am not an expert in respiratory physio I don't feel I can really respond robustly. As I mentioned earlier, so much still to learn.

We do know that there appear to be several different categories of "long covid" and it may well be that there are some with an abnormal gas transfer problem as described. I think what it does highlight is the importance of getting the right services to support people with long covid dependent on their symptoms.

It is probably worth adding our respiratory physiotherapy colleagues working with people with long covid tell us that advice re breathing techniques seems to be helping with the management of breathlessness so it does appear to be another tool in the box of interventions to support people -but again highlighting the importance of individualised interventions. I am certainly not advocating jumping in with breathing pattern work for all

I do also agree with your statement about the need for understanding the potential harms in physiotherapy treatments - just look at GET!
 
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Jonathan Edwards said:
Are you sure this is costochondritis? My special interest as an academic rheumatologist was in connective tissue pathology and I am doubtful that there is such a thing. Cartilage has no blood supply so there isn't really such a thing as chondritis, only perichonritis and I have never seen any good evidence for people with pain around the sternum having that. I have always thought of costochondritis as one of those made up words left over from 'physical medicine' of the 1950s, like fibrositis. I suspect m people with prominent upper rib ends probably have a mild scoliosis due to leg length discrepancy but I don't think even that is reliably demonstrated.
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Interesting. Adding 'costochondritis' to the list of things to investigate in more detail. As I mentioned earlier, we are hearing a lot about it in Long Covid and have previously heard about it in ME. Are there any papers/information sources you would suggest reading to learn more?
 
This is in relation to Lupus:
Many people with lupus have chest pain when they breathe. When this pain is not caused by pleurisy, it is commonly caused by inflammation of the chest muscle, cartilage, or ligaments, or of the joints that connect the ribs to the breastbone (costochondral joints).
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https://www.uofmhealth.org/health-library/hw118452

Musculoskeletal chest wall pain:
In one general practice sample, costochondritis, also known as costosternal syndrome and anterior chest wall syndrome, was the most common specific cause of anterior musculoskeletal chest pain, with a prevalence of 13%.5 Patients with costochondritis typically present with multiple areas of tenderness without swelling over the costochondral or costosternal junctions, palpation of which reproduces their pain. Most commonly, the cause is unknown.
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https://www.racgp.org.au/afp/2015/august/musculoskeletal-chest-wall-pain/
 
PhysiosforME said:
We do know that there appear to be several different categories of "long covid" and it may well be that there are some with an abnormal gas transfer problem as described. I think what it does highlight is the importance of getting the right services to support people with long covid dependent on their symptoms.
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I don't even think that Long Covid is a useful medical term. People who have had Covid have a variety of different continuing problems, which may coexist. Those problems need to be assessed by a physician if they are concerning. That is all as far as I can see.

To me it is more a question of not sending people with Long Covid to services when nobody knows what those services should provide - or indeed any reason to think they are likely to provide anything useful. As I indicated in my BMJ response to Lynne Turner Stokes I can see no particular justification for 'rehabilitation' in this situation since almost certainly the problems will resolve on their own if and when the time comes.

PhysiosforME said:
It is probably worth adding our respiratory physiotherapy colleagues working with people with long covid tell us that advice re breathing techniques seems to be helping with the management of breathlessness so it does appear to be another tool in the box of interventions to support people -but again highlighting the importance of individualised interventions. I am certainly not advocating jumping in with breathing pattern work for all
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Yes, but this is no good. We know from the history of PACE that therapists are not in a position to judge whether their treatment is working from routine practice. We know from the writings of people like Trudie Chalder and Jo Daniels and Lillibeth Larun that psychotherapists and physiotherapists are often convinced they can tell what is working and yet the trial evidence is that it would be completely impossible to identify any specific effect of treatment in routine practice. Most patients are getting better on their own.

So I am afraid that 'tool in the box' is just not a legitimate approach to looking after people, any more than showering them with antidepressants, antibiotics or opiates or drugs of this or that kind.

And I don't understand the individualised intervention bit. At the NICE committee I was told that the rationale for PACE and the results were irrelevant because psychotherapists didn't think that or do that any more. Everything was tailored to the patient. In other words the treatment had no evidence based at all. You can only legitimately individualise treatment if you know that the treatment works and in addition have proven predictive measures of response based on pre-treatment variables. So you not only need to do a valid trial but you need to do a complex stratified trial to assess predictive variables.

But none of this ever happens, it seems. Therapists just decide they know who needs what by hunch.
As I say, this is just no good. Rather than spending millions on unvalidated individualised rehab programmes we need some proper studies with a chance of giving reliable evidence. There is no point in pitching in and trying to help if we do not know whether we are doing good or harm.
 
PhysiosforME said:
Interesting. Adding 'costochondritis' to the list of things to investigate in more detail. As I mentioned earlier, we are hearing a lot about it in Long Covid and have previously heard about it in ME. Are there any papers/information sources you would suggest reading to learn more?
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I don't think so because I don't think it exists. Around 1980 when rheumatology became a serious medical specialty instead of just a dumping ground for the disabled we looked at these diagnoses and realised that they were made up. There is no chondritis. There were one or two probably quite reasonable studies suggesting that pain in some cases was secondary to stresses set up by leg length inequality but I doubt much more. I suspect that about half the population gets this sort of rib cage pain from time to time. The correct management is tomato a formal medical assessment to ensure there is no progressive cause and then reassure as far as possible and discuss sensible ways to try to minimise the problem. I am pretty sure nobody has ever done any valid trials.

I think the situation is summed up by the last sentence quoted by Sly Saint:
Patients with costochondritis typically present with multiple areas of tenderness without swelling over the costochondral or costosternal junctions, palpation of which reproduces their pain. Most commonly, the cause is unknown.

Which should really read: People often present with multiple areas of tenderness without swelling over the costochondral or costosternal junctions, palpation of which reproduces their pain. The cause is unknown and certainly not costochondritis.

The problem is musculoskeletal chest wall pain, nobody knows what the commonest specific cause is. Both this citation and the bit on lupus are just made up.People like to think they know about things but it is better to be up front about the fact that we don't.
 
Jonathan Edwards said:
There is a general princilple in medicine that anything that can do a significant amount of good must also be considered capable of causing a significant amount of harm. The physio world in the past does not seem to have understood this. I think things need to change.
Click to expand...

Can we get a nice big poster with this on it and send them to Wessely, Sharpe, Chalder, Moss-Morris & every CFS clinic across the land?
 
PhysiosforME said:
We are seeing a lot of people with Long Covid with breathing pattern disorders which is fascinating especially trying to understand why?
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Do you have any contact with respiratory physio's attached to autonomic clinics? I wonder if their experience might be helpful.

My cardiologist used to send POTS patients for full cardiorespiratory workup, issues with breathing pattern (especially on standing) were so regularly noted that now its just assumed and most new patients get a referral to respiratory physio regardless. Chest pain & tightness very common alongside it. Worth noting that the assumption is there's an underlying problem with respiratory drive and its not just psychogenic.

I appreciate that not all "long COVID" patients or ME patients will fit neatly into definitions like POTS but I'd be surprised if there wasn't a large overlap on the breathing problems.
 
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