The Times: Infectious diseases expert warns of spike in ME cases

lunarainbows

lunarainbows

Senior Member (Voting Rights)
The NHS is facing a “post-viral tsunami” with thousands of people struggling to recover from Covid-19 and experiencing symptoms of the debilitating condition ME, a leading medical researcher said yesterday.

Paul Garner, an expert in infectious diseases at the Liverpool School of Tropical Medicine, said he remained exhausted and lacking energy 14 weeks after having had the virus.

Professor Garner said he is “unable to be out of bed for more than three hours at a stretch, my arms and legs are permanently fizzing as if injected with Szechuan peppercorns, I have ringing in the ears, intermittent brain fog, palpitations and dramatic mood swings”.

Charities are predicting a sharp increase in new cases of myalgic encephalomyelitis (ME)or chronic fatigue syndrome as a result of...

(paywall)

https://www.thetimes.co.uk/edition/...s-expert-warns-of-spike-in-me-cases-307pfbjlg
 
Jonathan Edwards said:
The policy document:

https://www.england.nhs.uk/coronavi...ts-recovering-from-covid-19-5-june-2020-1.pdf

contains all the familiar BPS buzzwords including multidisciplinary and IAPT. There will be some practical work to do with lung and tracheotomy problems but the overall frameworks the usual one I am afraid.
Click to expand...

I just skimmed it and noticed IAPT for psychological help/anxiety. But in general there seems to be a lack of anything relating to “post viral fatigue”, or ME-like symptoms, which seems odd. So I wonder then if these people will be sent onto the usual CFS clinics after these post Covid clinics, if their symptoms don’t improve.
 
He isn't technically wrong. We don't know if they are the same or not.

That doesn't mean it's not sensible to treat what looks like ME/CFS as such.

Not that there's much in the way of treatment, but at least treating it as ME/CFS means knowing there's no guarantee people will ever recover and that GET can make things worse and that patients need to be protected from inappropriate psychiatric diagnoses and disbelief. Of course what many docs are going to do is the complete opposite of this because of the BPS bullshit.
 
I agree @strategist

Reading some of the other comments on that article (not the ones I’ve pointed out here), I’m reminded once again why I try not to read comments underneath articles. A lot of very ignorant people including “have you thought maybe it’s your lifestyle choices” that make you ill, “this is scaremongering“, etc...
 
Jonathan Edwards said:
The policy document:

https://www.england.nhs.uk/coronavi...ts-recovering-from-covid-19-5-june-2020-1.pdf

contains all the familiar BPS buzzwords including multidisciplinary and IAPT. There will be some practical work to do with lung and tracheotomy problems but the overall frameworks the usual one I am afraid.
Click to expand...
This document says it is specifically for patients who have spent time in critical care in hospital. It seems to focus on those who had pneumonia and were on ventilators.

There's no mention I can see of those who are getting post viral symptoms who have not been sick enough with Covid-19 to be hospitalised.

The section on fatigue:
Issue: Fatigue

• Prevalence and relevance: Fatigue is already reported by people following a critical care admission or any severe illness. However, the clinical picture is that patients who have had COVID-19 are reporting extreme fatigue beyond the usual reported levels. This is likely to impact on the length of both recovery and need for supportive care packages and equipment. It is also likely to have an impact on return to activities and return to work. Of people who have been critically ill, 10% could develop chronic fatigue. Therefore, it is important to ensure a gradual return to activities and exercise and to teach pacing methods.

• Considerations: Early identification of fatigue and implementation of fatigue management strategies into daily life are very important. Fatigue management consists of sleep hygiene, energy conservation techniques, 31 https://www.nice.org.uk/guidance/cg179 21 | After-care needs of inpatients recovering from COVID-19 pacing, prioritisation, gradual activity engagement, graded exercise and appropriate nutrition. Early fatigue management techniques embedded in recovery could help to reduce the impact and the likelihood of fatigue becoming persistent or chronic.

• Resources: The Royal College of Occupational Therapists have developed practical advice for people who have been treated in hospital, for those managing post-COVID fatigue at home, as well as for those in need of conserving energy during and after COVID. In addition to this, there are numerous resources related to critical care and other conditions Occupational therapy, dietetics, physiotherapy, including specialist neurorehabilitation physiotherapy, MS Society online fatigue management course, specialist outpatient respiratory physiotherapy.
Click to expand...

It might be worth taking a close look at the Occupational Therapists document, and the MS society fatigue management courses, @PhysiosforME.
 
What can be done by us, in terms of public statements and contacting the relevant professional bodies, to protect these post-Covid patients against GET, @Jonathan Edwards, @PhysiosforME?

While the NICE guidelines are being reviewed and GET is under (hopefully unfavourable) review, it seems madness to ruin the health of another cohort of patients by using it.

What can we do to protect these patients?
 
lunarainbows said:
Reading some of the other comments on that article (not the ones I’ve pointed out here), I’m reminded once again why I try not to read comments underneath articles. A lot of very ignorant people including “have you thought maybe it’s your lifestyle choices” that make you ill, “this is scaremongering“, etc...
Click to expand...

I'd suggest posting a link to that video interview with Dr Nina Muirhead. I think that will kill that sort of argument stone dead.
 
I have a question, please feel free to move it if this isn't the right thread:

Is there any proof/data on people actually really having anxiety after an infection, therefore deconditioning and developing something that for the uneducated eye looks like ME? (or rather chronic fatigue)

What I mean by that: Where/how has the idea on this been born? Are there cases where a psychosomatic approach maybe is reasonable/adequate?

I know e.g. when people have pain from a herniated disc they often go into a protective posture, stop moving around much and therefore develop more pain. From what I understand in cases like these it makes sense to encourage the patient to "go against their instinct" and "ignore" that their symptoms might get worse first before they get better.

So I'm wondering if that could be the case in some post viral patients, too. I just don't understand how else they have come up with this idea to push them physically to go beyond their limits if there had never ever been cases where it has been successful.

Hope I make sense..
 
Can anyone able to post please post a link to DecodeME and ask patients to sign up and everyone else to tell every patient they know about the study?

I'm not a subscriber and am not being given the option to post.

This needs to be our message over and over in the comments section of every online article that we see now.
 
Leila said:
Is there any proof/data on people actually really having anxiety after an infection, therefore deconditioning and developing something that for the uneducated eye looks like ME? (or rather chronic fatigue)

What I mean by that: Where/how has the idea on this been born? Are there cases where a psychosomatic approach maybe is reasonable/adequate?
Click to expand...

The idea was born in 1989 in a paper by Wessely and Chalder (before any studies had been done). They just made it up on the spot. Afterwards they acted as if it had been confirmed but as far as I'm concerned it has never been shown that this explanation is accurate for any patients.
 
Last edited:
Leila said:
What I mean by that: Where/how has the idea on this been born? Are there cases where a psychosomatic approach maybe is reasonable/adequate?
Click to expand...

As @strategist says a couple of people pretty much just decided that might be the case and then set about building their careers doing their darnedest to prove themselves right.

They've maintained these abnormal illness beliefs by sneakily redefining other people's definitions of the disease so as to include as many patients who do not have the disease as possible and who, like most people, benefit from exercise.

The establishment has colluded by rating "evidence" by who presents it rather than what is actually presented. Eminence based evidence as Prof Hughes so neatly put it.
 
You must log in or register to reply here.
Back
Top Bottom