International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

Part 2
Dr Theo Vos
He talked about a review of epidemiological studies that was done including 10 follow-up studies and two large medical record data collections systems in the US. 13,500 children. This is the study that came up with the three symptom clusters of
1. Fatigue, bodily pain and mood swings*
2. Ongoing respiratory symptoms
3. Cognitive problems

* There was a facility to ask questions. I asked one, but I didn't see anyone else's. I noted the issues with most survey tools for depression and anxiety disorder, that tend to overestimate these conditions in people with post-infection fatigue syndromes, as the symptoms of orthostatic intolerance can be mistaken for the symptoms of anxiety, fatigue can limit the ability of people to engage in activities they previously enjoyed, and sadness and worry are reasonable reactions to the onset of a chronic illness. And I asked if the presenters of these epidemiological reviews who are defining symptoms understand these problems and the bias they bring to symptom description.

The answer I got was that mental health symptoms would not be covered in any detail in this webinar about PCC in childen and young people, but I might like to look at the recent WHO webinar on mental health issues and PCC.

Dr Vos noted that there was a lot of variation in the studies. The incidence of PCC seems to be lower in children.
At 3 months, 2.8% have one or more symptom clusters. Of the cases at 3 months, 15% continue to have symptoms at 12 months. The disability is similar to that of severe brain trauma or complete hearing loss - that might be a useful quote for advocacy.

The condition resolves in the majority of cases. Omicron seems to have a lower risk of leading to PCC, 1/4 to 1/3 of the risk of that of the earlier variants.

It was mentioned that there are other infectious diseases with extended symptoms including dengue, Q fever and a 'host of other mostly viral diseases'. No mention of ME/CFS.

The condition resolves in the majority of cases.

There was quite a lot of detail, I didn't get the name of the paper. I'll add it if I find it.
 
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Part 3
Lauren O'Mahoney
Another epidemiology review. UCL, 2021 paper. Behnood et al
No mention of the problems with studies contributing to the review. At this point I was annoyed about the 'mood swings' issue and was writing my question, so I didn't hear a lot of the presentation.

Dr Isabelle Dewandel - Stellenboschh University
Paediatrician and clinical researcher
There has been limited data from sub-Saharan Africa
There is a very high incidence of co-morbidities - TB and HIV (staggering high incidences, 20% of people are living with HIV, I think that was in South Africa?)
The study was on children (aged 13 or less) admitted to hospital, 50% were less than a year old. A very large percentage of the children had lung abnormalities. They were mostly very young children presenting mainly for respiratory symptoms. Covid-19 positive children were much more likely than Covid-19- negative children to be readmitted later and have ongoing problems.

Selina Kittenborg Berg - Denmark
Long Covid Kids DK
A survey was sent to the mothers of all Danisg children with a confirmed positive PCR test. Used WHO Clinical Case definition of PCC in adults - symptoms had to remain for at least 2 months. Data was presented for 0-3 months; 4 to 11 years; 12-14 years.
Better to read the actual paper I think.

For emotional functioning, in a notable first, the control group reported feeling worse than the children meeting the PCC definition! Probably worth finding the paper for that alone.

Nina Iwi Putri - Indonesia
They are seeing suspected Long Covid in children, but it's hard to be certain.
A study is underway, in Jakarta, Yogyakarta and Surabaya. It will involve 200 children, and 2 years of followup. Children are selected from those who come to the hospital for treatment. The study sounds a bit problematic, and small, and progress in recruitment has been slow. The University of Melbourne is associated with the study (Julie Bine; Stephen Graham).

They have also been campaigning for awareness of the condition. Nina could be a useful contact for advocates in Indonesia.

Edit to add - a study of 200 children in a country of 275 million people. The study has been recruiting since April and they have 40 children signed up so far. The difference between the level of care in Indonesia and the UK is so vast. It's a sad state of affairs that the children of Indonesia with Long Covid might be better off with no specialised care than those in countries that are rolling out multi-disciplinary clinics with goal setting.

Stephen Freedman - University of Calgary
PERN Pediatric Emergency Room Network
A study involving 8 countries, most data from the US, Canada and Costa Rica
2368 people aged less than 18 years, symptoms persisting 90 days after testing, pre-existing symptoms were excluded. 5.8% of children seen had post Covid condition at 3 months (9.8% of those who were hospitalised, 4.6% of those who were not hospitalised)
Risk factors - older age, number of symptoms when acute, hospitalisation for more than 48 hours
 
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chrisb said:
Is it clear whether these symptom clusters appear indepently or whether two or more clusters may occur in one patient. It looks odd for fatigue and cognitive problems to be separated. A considerable overlap woulsd be expected.
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I agree, those three symptom clusters seemed very odd. It does seem possible for someone to have two or more clusters of symptoms.
 
Part 4:
Daniel Munblit - Imperial College London
Core Outcomes
COMET Initiative - Core Outcome Measures in Effectiveness Trials

The Adult PCC core outcomes - Munblit et al 2022
include 'post-exertion symptoms'
The Delphi process sounded decent - around half of the participants had lived experience. 1535 participants and 2 rounds.

They are currently working on the Children and Young People PCC core outcomes
There is an invitation for stakeholders to participate in the Delphi process. The Delphi will be launched in the next few weeks.
https://www.pc-cos.org
I hope some forum members will participate. For more information, contact Nina Seylanova, Nina.seylanova@gmail.com
@SNT Gatchaman


Laura Malone - United States
Models of care in children and young people
Morrow, Malone et al 2021
Multidiciplinary, biopsychosocial model, goal is to improve functioning

Most common symptoms, in order of prevalence, are fatigue; brain fog; headaches; dizziness/light headedness/vertigo; anxiety/worries; breathing problems

There is an assessment, then the case is discussed by a team and they make a plan. They have an education specialist. There is followup after about 2 to 3 months. They offer an outpatients program of, I think, 4 to 5 days a week, half days each day.

Sounded very much like the usual approach to fixing Long Covid/ME/CFS to me.


Dr Toro - Columbia
They also apply the BPS model. They work to ensure there is fun in the child's life, and independence is developed. They work on physical activity. School and play are essential parts of children's lives.

A circular model of Assessment >> Assignment >> Intervention >> Evaluation >> Assessment
Cycle 1 might be on pain relief, and Cycle 2 on sports practice
Goal setting involves the children; most children are keen to get back to football, both boys and girls.

Dr Toro seemed very convinced that what they are doing is making a difference. Yeah...


Wilson Were - WHO
Good news, with the information we have, we can describe the condition.
In terms of care - its very clear that we need to provide multi-disciplinary care
...yeah, also

END

Like I said, some good work with the core outcomes, the data platform. But still a lot of people running around thinking they are doing something useful when in fact they probably are not, still a lot of scope for children and their families to be harmed by the medical care they receive.
 
Hutan said:
Part 4:

Laura Malone - United States
Models of care in children and young people
Morrow, Malone et al 2021
Multidiciplinary, biopsychosocial model, goal is to improve functioning

Most common symptoms, in order of prevalence, are fatigue; brain fog; headaches; dizziness/light headedness/vertigo; anxiety/worries; breathing problems

There is an assessment, then the case is discussed by a team and they make a plan. They have an education specialist. There is followup after about 2 to 3 months. They offer an outpatients program of, I think, 4 to 5 days a week, half days each day.

Sounded very much like the usual approach to fixing Long Covid/ME/CFS to me.
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More recent paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8906524/ https://www.s4me.info/threads/long-...ance-and-me-cfs-2022-morrow-rowe-et-al.25013/

Long section on Management includes:

PEM and Managing Activity
Exercise intolerance was identified as a common symptom in some pediatric long COVID studies [8, 101•], but few have ascertained for PEM. We recommend utilizing pacing techniques for many post-COVID symptoms. Pacing as a management technique can be helpful to avoid exacerbating symptoms. Gradual return to activities should be approached with caution and modified to accommodate the severity of each patient’s condition. For patients who are moderately to severely impaired and cannot tolerate exercise while seated or standing, exercise should occur while lying down. Start with stretching for 1–2 min and increase the duration of activity gradually as long as PEM is not provoked. For the mildly impaired, start with 5–15 min of walking. Manual forms of physical therapy can be a bridge to tolerating exercise. Sometimes exercise will not be tolerated until OI is adequately treated [83•].
 
Thanks, Hutan.

Hutan said:
The condition resolves in the majority of cases. Omicron seems to have a lower risk of leading to PCC, 1/4 to 1/3 of the risk of that of th pearlier variants.
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Is there any good data on this? If they are just comparing percentages of people who have PCC following different variants of Covid, that doesn’t necessarily tell us if it is the variants themselves have greater or lower risk of PCC. If people are genetically predisposed to getting PCC then it could be that those who are most susceptible had already got it by the time omicron came along. Or it could be that vaccines are reducing PCC, and there is a higher percentage of people who are vaccinated prior to contracting omicron. Or it could be that prior infection with Covid reduces the severity of subsequent infections, and that reduced severity lowers risk of PCC. etc.

It would be great if there is something about omicron itself which reduced risk of PCC, but I’d be interested to know if this has been actually been determined, or whether it is only a correlation.
 
'Pearlier variants'... Apologies for my typos - I just typed and posted without checking much. I did edit it a while back.

From memory, there was no data presented to support the statement that omicron has a lower risk of Long Covid than the earlier variants.

It's probably early days for omicron, and this idea of a lower risk might be largely wishful thinking compounded by the (incorrect, I think) idea that more severe infections are more likely to cause Long Covid. I think that idea is mostly due to the mixing up of symptoms caused by severe Covid-19 (e.g. including damage caused by being on a respirator) with symptoms caused by ME/CFS-like Long Covid.

Some of the possibilities you list @Robert 1973 might be true.
 
Robert 1973 said:
It would be great if there is something about omicron itself which reduced risk of PCC, but I’d be interested to know if this has been actually been determined, or whether it is only a correlation.
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Given different viruses seem to carry different risks of triggering ME, it is possible that different strains of the same virus carry different risks of triggering ME. This might suggest it is possible for different strains of Covid to have different probabilities of triggering ME type Long Covid.

However, given most Long Covid research does not distinguish between symptoms that arise directly from anatomical damage during the initial acute infection (and are related to the severity of that infection) and the contrasting ME type Long Covid which we presume is an ongoing process, it is not clear that any lower levels of Long Covid following the Omicron variants are down to milder acute infections occurring for the various reasons discussed above rather than the virus itself being less likely to trigger Long Covid.
 
Still extremely weak, and no one is able to admit that this has long been denied and dismissed, that medicine bears all the responsibility here. Still moving at a slow crawl, still clearly trying to wait it out without doing anything about it. Still obsessed with magical rehabilitation while at the same time happy to point out that most recover on their own, clearly a natural process.

The continuing inability to admit that this was known for decades is abysmal. It shows a profession unable to deal with its own weaknesses, incapable of learning from experience without technology, and unable to put up the work to develop new technologies, if not developing them frees them from any responsibility.

It's playing out about as poorly as how some countries are unable to deal with their past, denying that this event happened or that population was wronged. Very immature.
 
Robert 1973 said:
Is there any good data on this? If they are just comparing percentages of people who have PCC following different variants of Covid, that doesn’t necessarily tell us if it is the variants themselves have greater or lower risk of PCC.
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There does seem to be a fair amount of evidence for this from the ONS data and other studies. The risk reduction due to vaccination is probably more significant, but it does seem that Omicron is less likely to lead to Long Covid.

ONS found a roughly 50% reduction for double vaccinated people from Delta to Omicron, but a much smaller reduction for triple vaccinated people. ONS numbers are all for first infections, so neither reinfections nor susceptibility should be issues here (unless people who are more susceptible to Long Covid are also more susceptible to infection in the first place).
 
Chronic fatigue syndrome
What is the ICD?
The International Classification serves to record and report health and health-related conditions globally. ICD ensures interoperability of digital health data, and their comparability. The ICD contains diseases, disorders, health conditions and much more. The inclusion of a specific category into ICD depends on utility to the different uses of ICD and sufficient evidence that a health condition exists.

What is chronic fatigue syndrome?
Currently there is no consensus agreement amongst medical professionals as to how chronic fatigue syndrome may be definitively diagnosed. It may include chronic, profound, disabling, and unexplained fatigue with coinciding symptoms such as sleep problems or post-exertional malaise.

In ICD-11, it is classified under Chapter 8: Diseases of the Nervous System, within the code 8E49 Postviral fatigue syndrome. During the revision of ICD-11, a number of proposals were received arguing for the re-positioning of chronic fatigue syndrome from its current position to the Chapter 01: Certain infectious or parasitic diseases.
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Literature review and findings
In response to the proposals, WHO conducted an extensive literature review of research relating to chronic fatigue. The review found that there remains insufficient evidence to classify chronic fatigue as an infectious disease, at this time. The review also confirmed the lack of consensus on a reliable diagnostic pattern of symptoms, the continued debate about etiology and the absence of any uniform or reliable treatment. The only constant in the studies reviewed was the lead symptom of ‘fatigue’, persistent over time.

Decision
As a result of the review, there is no change to the current placement of the term in ICD-11 and the category ‘post-viral fatigue’ that is the indexing target for inclusion of chronic fatigue was retained within Diseases of the Nervous system, until such a time as evidence justifies an alternative.
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https://www.who.int/standards/classifications/frequently-asked-questions/chronic-fatigue-syndrome

"chronic fatigue" :banghead:

shouldn't the World ME Alliance be all over this?
 
Wellcome is really linked to the SMC, Farrar is matey with the usual sorts (Wessely, etc). Hard to know much about Farrar's personal views.

Here he was linking to the Times article on Sharpe being forced out of.... hold on, isn't Sharpe one of the co-authors of the new piece challenging NICE?

 
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Esther12 said:
Here he was linking to the Times article on Sharpe being forced out of.... hold on, isn't he one of the co-authors of the new piece challenging NICE?
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I see neither name, although their views are clear here.

I knew I remember McKee's name and it's because he was recently an author... on Long Covid guidelines. Ugh.


Frankly very doubtful that he is in any way aware that many long haulers meet ME criteria, or that any of this relates to the criticism and the problems with CBT & GET where he sided with the bullies against the patients, even as his recommendations on LC include working with the patients.
 
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