UK - NHS England online tool and clinics for long Covid.

This is especially annoying when people in other countries point to the UK clinics as somehow doing something. A common refrain in France lately. Meanwhile they are exactly built on the "fatigue" clinic model and just as useless.

https://twitter.com/user/status/1420095566298722306

 

What is it when a "clinic" chooses the easiest, most likely to "recover" patients, regardless of what they do? A sham, is what it is. They want the salary but they don't want to do the work.

https://twitter.com/user/status/1461780785367863296


Document here:

https://twitter.com/user/status/1461849119601971207

 

To summarise, what do Long Covid Clinics offer?

Treatment Biomedical- NO.
Treatment Psychological-NO!!!*

*Absolutely not.

So more for your mildly affected patients who don’t need or want actual help?

Or those super healers who can go from severe acute illness into a short period of slightly delayed recovery before racing past those recovery milestones naturally and efficiently while also making the time to enthusiastically fill out patient satisfaction surveys about how without the generic mainly online based interaction with the Clinic they would never have made it this far?

Such a patient would be sure to receive glowing testimony from Clinic staff. For dedication to betterment of own health taking responsibility and PMA. An example to others.

I wonder what happens to these others?

 

Given that there is no such thing as “severe diagnosis of CFS” I don’t think they need worry that they would be troubled by such a phenomenon.

However all the other groups identified for exclusion from their services, might be ever so slightly less impressed by the Clinic frontage than average health system naïve LC patient.

This could lead to a higher than average level of honesty in their patient feedback. Which I am guessing might not be overly positive?

 

This is just absurd. How is that acceptable in this age when the concept of addressing health inequality is supposedly woven into the fabric of our healthcare system and spoken about more often than treatment itself.

 

I think it is still because they are hung up on the single symptom of 'fatigue'. They assume that a person with the conditions listed can't have 'CFS' because their fatigue is 'explained' by their other condition(s). If they understood the cardinal symptom of PEM/PESE and recognised the multi-system nature of ME/CFS their rejection of these patients would be seen for the discrimination it is.

 

I looked at Leeds, Devon and Coventry referral criteria online just as a test, none had exclusionary criteria like this. Coventry demand a positive antibody or PCR test which is not appropriate at all.

Better not seek an autism/personality disorder/[insert other common dx] diagnosis or you might be excluded from healthcare. Better get diagnosed if you need to claim disability benefits to help with your unsupported illness. Hmm.

 

This may have already been said, but I checked out the referral criteria to the Essex fatigue clinic, which lists the same exclusion criteria, so if you have severe CFS and are housebound, no fatigue service for you.

Will accept aspergers, won't accept autism. ?.

Also, just to note, having therapy within mental health services may only mean those in the more intensive mental health services that are usually only accessible to those who have had major crises, rather than those using IPAT. Not condoning that, just wonder if that might be the case.

Edit - https://coronavirus.msehealthandcarepartnership.co.uk/localservicesandpathways/long-covid-clinics/
Download MSE COVID directory of services

 

https://thorax.bmj.com/content/thoraxjnl/76/Suppl_2/A19.1.full.pdf

IS A NOVEL DIGITAL BREATHING & ENERGY MANAGEMENT PROGRAMME EFFECTIVE IN REDUCING SYMPTOMS OF LONG COVID?

J Moore, J Plumbe, N Hilliard, K Plumbe, N Beckett, T Burch, K Bahadur.

Respiricare, Kent, UK

10.1136/thorax-2021-BTSabstracts.30

Introduction

The most common symptoms of ‘Long COVID’ which is defined as symptoms >12 weeks post COVID infection, are breathlessness and fatigue. Breathing retraining and holistic management for patients suffering with ongoing symptoms of COVID has been recommended to help manage these symptoms.1 Ensuring quality rest and activity energy management is essential for the management of chronic fatigue.1,2 The aim of this study is to investigate the effectiveness of a novel digital 6-week breathing & energy group management programme for patients with Long COVID.

Method

We conducted a pilot, cohort, observational study using qualitative questionnaires pre and post intervention between Jan -May 2021. The intervention was led by breathing, fatigue specialist physiotherapists and psychological wellbeing practitioners. Baseline information was gathered with an individual digital assessment. Participants were enrolled to weekly digital group sessions focusing on breathing retraining
and establishing a good energy management balance. A follow up re-assessment was completed post intervention.

Results

72 participants aged between 24–81, 45 female,27 male, 57 White British, 7 Black British, 2 Black Asian, 6 Other Ethnicity were enrolled. Baseline data showed 87% (n=63) had a breathing pattern disorder (Breathing Pattern Assessment Tool Score> 4.) 69% (n=50) had signs of hyperventilation syndrome (Nijmegen score > 23). 77% were suffering with severe fatigue (Fatigue Severity Scale (FSS) > 5). Outcome measures used were the Self-Reported Chronic Respiratory Disease Questionnaire (SR -CRDQ), General Anxiety Disorder 7 (GAD7), Patient Health Questionnaire PHQ9 and FSS. 86% (n=62) patients had a clinically significant improvement in at least 1 of the SR-CRDQ domains (breathlessness, emotion, fatigue and mastery).53% (n=38) had a clinically significant reduction in FSS. 51% (n=37) patients had a clinically significant improvement in anxiety or depression.

Conclusion

Analysis shows that a digital, novel 6 week breathing and energy management programme was beneficial for patients suffering Long COVID. Continued investigation and further research is required to evaluate the effectiveness of breathing retraining and energy management for patients suffering with Long COVID.

REFERENCES

1. George PM, et al. Respiratory follow-up of patients with COVID-19 pneumonia. Thorax 2020.

2. Updated NICE guidance on chronic fatigue syndrome. BMJ 2020.

 

digital breathing?

 

Digital breathing would not appear to be covid safe.

 

They don't have a clue. They genuinely don't have a single damn clue. Medicine will have to be dragged kicking and screaming to simply begin doing the right thing.


Long Covid: Sick and suffering face long wait for help
https://www.channel4.com/news/long-covid-sick-and-suffering-face-long-wait-for-help

And the Royal College of GPs say there aren’t enough community physios and occupational therapists to help them.​

Aside from this being the absolute worst possible way to deal with this, being 1-on-1 and scaling linearly, they simply don't care that this model is effectively useless. It's just a way to shove responsibility elsewhere. I don't think there's ever been a more offensive display of incompetence, given it has been continuous for over a century and still not a damn clue.

 

Still the same. I saw a comment yesterday from a physician who was asked about LC and said "oh, there are clinics for that, it's very rare". No wonder most physicians don't see LC in their practice, especially specialists, it never reaches most of them.

Meanwhile, the "clinics":

https://twitter.com/user/status/1470394727409270785

 

"Long Covid? Oh, there are clinics for that, it's very rare"

Although it's hard to say whether it's bad that such a clinic closes. But it looks like the initial funding, most of which seems to have been spent on unrelated things in general practice, has run out and health care services got bored with it.

https://twitter.com/user/status/1470720603359354880


Edit: what could have possibly given them this idea, I wonder why... It seems they were quite literally going to attribute themselves credit for natural recoveries and now have no idea how to deal with reality asserting itself. Like some con artist convincing a town of rubes of magical powers against a threat, unaware that there was an actual threat and now they have their pants on their heads and don't know what to do.

https://twitter.com/user/status/1471221071030497281

 

Newcastle Long Covid doctor warns there's 'no magic bullet', but tells patients 'they will get better'

"One of the UK's most senior Long Covid doctors has warned there's no "magic bullet" to curing a condition that remains without a "clear physical cause".

Dr Graham Burns is a senior respiratory consultant at the RVI in Newcastle. He's also one of two "national speciality advisors" who were appointed in autumn 2021 to help guide the national response to Long Covid, which could affect millions in the UK.

Dr Burns also told ChronicleLive that he thought Long Covid had a "perception problem" and it was important patients were not despondent about their illness.
....
He added that insomnia and anxiety about recovery had in some patients caused a vicious circle. "It's a big problem," he said. "People are not sleeping. Insomnia is a major, major issue for people with Long Covid. People aren't sleeping and it's exacerbating things like anxiety and depression."

Dr Burns explained that, while he was by no means saying anxiety was the root cause of many Long Covid symptoms, it "seems likely" that "understandable anxiety about a perceived failure to recover" contributes to insomnia and then to other issues exacerbated by that, such as fatigue or headaches.

His message to patients was not to be despondent. He said: "If people are badly enough ill that they need to see me, then it's pretty bad. But recovery is possible. By the time patients get to see me in clinic they have been unwell for probably several months. The message I want to get to people is that recovery is possible, even if it takes time."

https://www.chroniclelive.co.uk/news/health/long-covid-newcastle-graham-burns-22645048

 

I wonder what evidence Dr Burns has for his pronouncements other than wishful thinking? I realise that many people do recover. But for those who don't I wouldn't be surprised if Dr Burns is going to say the problem is all in the head.

A very big problem for everyone who ever gets ill with a disease, viral or bacterial, is that medicine and society have forgotten that people don't just fall neatly and conveniently into being "recovered" or "dead" after a disease apparently disappears, some of them stay sick long-term or permanently. And medicine and society blame and disbelieve the patient for this.

 

Without a clear physical cause. Hum... where have I heard this before?

 

With people like that in charge...

And that ridiculous message of "recovery is possible", as if this were an issue, or a "failure". Still completely clueless after all this time.

Also not a doctor but severe insomnia is far more serious than just "anxiety and depression". The obsession with reducing everything to those vague poorly defined concepts is just absurd.

And telling people who will not recover that they will is just cruel but also terrible for the credibility of medicine. The need for physicians to say "I don't know" badly needs to be implemented as a rule, hopium is completely out of control here, all because of stupid beliefs about mass hysteria. Pffft.

 

Well, I think we can all agree that some people with LC will slowly recover over a period of months to a few years.

The issue then is what caused recovery. If everyone who has LC at some point visits a clinic --
it seems clear at this point that clinic staff will claim the victory over illness. But just because someone shows up at clinic it doesn't follow that they are the cause of recovery. Any more than (I might add) showing up at a forum will continue to keep you sick. It's a very unscientific premise. One that they will in no way puncture by doing any science to uncover what is the reality for people with LC. Better to go on spouting vague positive encouragement.

Being an expert these days is all glory. You're right even when you are so very wrong. Just don't check beneath the veneer.

They are failing to see that the 'anxiety' isn't psychological but primarily physiological and that release of adrenaline is not based on fear but a disregulated system and that constant release causing symptoms like tachycardia are what lead to dysautonomia. Which cannot be fixed by a nice chat with a psychologist or a compassionate session with a physio.

 

Anxiety can also be an understandable reaction due to the changed circumstance of the person who is ill, and their concerns for the future.