Clinical symptoms and markers of disease mechanisms in adolescent chronic fatigue following Epstein-Barr virus infection, 2019, Wyller et al

Simone said:
Merged post

A news article I stumbled upon about a Norwegian study run by a pro-psychosocial model researcher, but which also includes counterpoints by a paediatrician saying many of the things we would wish to say.

http://sciencenordic.com/few-physic...als-and-those-afflicted-chronic-fatigue-syndr
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It's a translation of the forskning.no (norwegian online science magazine) article @Kalliope posted earlier in this now merged thread.

We love professor Sommerfelt, he does what he can to improve childrens situation here, including voicing his opinion in interviews. It used to be mostly only Wyller that made statements in the media, of the doctors working with ME-patients. It really helps with a bit of balance - and shows the public how the disagrement is between professionals, not only ME-patients protesting.

Note that Sommerfelt (Stavanger/Haukeland) and Wyller (Oslo) are head of the two departments/wards that see children with ME in Norway - with very different philosophys towards treatment and care....
 
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Amw66 said:
Note the reference to CBT and GET in UK.
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Yes, Wyller have been one of the strong proponents of CBT, GET and also to some degree LP.

What I also note, is this time he had to refer to NHS, think that's new. It used to be 'PACE, the largest ME-study' and 'Cochrane, gold-standard evidence' or something similar. It seems like not even Wyller will refer to these now - progress....?

NHS, the UK health authority, recommends cognitive behavioural therapy and graded exercise therapy – a customized training programme aimed at increasing activity levels over time.
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inox said:
What I also note, is this time he had to refer to NHS, think that's new. It used to be 'PACE, the largest ME-study' and 'Cochrane, gold-standard evidence' or something similar. It seems like not even Wyller will refer to these now - progress....?
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Oh, how I wish that was true, but he said the following to media in April:

Norwegian professor: The criticism has been groundless
Professor Vegard Bruun Bratholm Wyller believes the report from the British health authorities supports that the criticism of the PACE study has been unfounded. He is a senior consultant at the Children's and Youth Clinic at Ahus.
"This criticism appears to be scientific, but in reality it's characterised by a campaign aimed at weakening the credibility of the PACE study. The report that is reproduced in BMJ is only about ethical / legal aspects, but the researchers behind the PACE study have recently answered in depth - and very convincingly - on the methodological objections, he writes in an email to forskning.no.

This was in an article at the news site forskningno declaring that there were no serious faults in the PACE trial after all.
 
Kalliope said:
Henrik Vogt has commented the article. Here's a google translation:

There is no "strictly defined ME" or "not strictly defined ME". It is not possible to create specific specific criteria when one does not initially understand the disease and its delimitation. One may decide to define a smaller group of patients with several criteria, but that does not mean that one has blinked out a more "real" group. This is not only unsustainably scientific to claim that some criteria blink out a "strictly defined ME group", it is ethically problematic as it implies that a group of patients does not have "the real problem". This is especially unfortunate in a context where patients have had difficulty in being taken seriously.

There is evidence for treatment / strategies that work both research-wise and from healthy stories.

In addition, several of Recovery Norway's recovery stories from people who have been among the most sick in the country (bed-ridden in dark rooms over time) and / or who have been ill according to all criteria, including the Canada criteria.
In one story, for instance, one of our female members received ME diagnosis according to the Canada criteria from the cancer doctors Fluge and Mella in Bergen (participated in the rituximab study) - before she recovered with a cognitive approach and stress management at the Clinic for Stress Medicine. on Fitjar.
Should the members of Recovery Norway believe Sommerfelt in that cognitive techniques do not work against "strictly defined ME", they would logically have been hindered from becoming healthy.

Henrik Vogt
Head of Recovery Norway, doctor, PhD
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They might have been on the way to recovery anyway.....

That said, personally I do pay attention to anecdote as its the best we have and the start of much scientific enquiry. I sympathise with Vogt in that patients should be believed ( apatient saying "I was in a wheelchair, was symptomatically ME and got better after whatever BPS programme" should not elicit a "Well, you never had ME then " , because ME is still a syndrome - symptoms = condition, we do not understand spontaneous recovery, we do not know what the CPET status of such a person may have been prior to the BPS therapy nor after (are they biologically recovered?), we do not know what CPET over the course of spontaneous recoveries may show, we do not know what other tests for disabling PEM inducing metabolic abnormality may be found beside CPET, and 2 day CPET worsening = ME is an assertion of a definition anyway (though it may turn out to be the best one).

At the same time has Wyller addressed PEM as recorded on CPET? If not why not? Is he in fact dealing with a different cohort fro many pw diagnosis of ME?

The suspicion remains with BPS as applied to ME, that while applying a downstream mind-brain-body models which may help some, they are still promoting denial of alternative views of the conditions, because such views might be inimical to recovery in their subsets. This remains totally unfair and potentially dangerous. Though patients are being told that they are ill due to a sensitised brain causing physical symptoms, the ghost of false illness belief can still be invoked to silence heretics "conniving" in keeping patients ill.

Sorry to repeat old thoughts but this issue will go on and on until we get proper subgrouping. BPS frequently refer to mental illness but mental conditions are not treated in this way.
 
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richie said:
a patient saying "I was in a wheelchair, was symptomatically ME and got better after whatever BPS programme" should not elicit a "Well, you never had ME then "
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That sounds very good and I would like to be wholehearted about it. I would be reluctant to tell anyone I did not think they had ME but there are good reasons why we have to consider the matter.

1. There is a script for selling "treatments" to us. It goes "I was very sick, bedridden, in a wheelchair. My sister/ parents/friend/other suggested I try XYZ. I was very sceptical but they kept on and I thought I had nothing to lose. To my amazement I am now well again. I couldn't keep my good fortune to myself so I am now treating other ME patients like me for a large amount of money" Well I added the last bit!

2. Maybe there does exist an illness which matches the BPS idea of ME and FNDs and which can be cured by CBT and GET. That is not ME even if there is a superficial likeness.

3. Before CFS, ME was distinguished from post viral states and EBV cases which lasted for a prolonged time. These tended to resolve in a year or two. The cases of ME where people have recovered and are now climbing mountains with no ill effect are usually people who were very ill at the beginning, bedbound or wheelchair users who had EBV.

It is more common for people who have ME to think they are better but are just in remission. They overdo things and end up worse than before. My own view is it is dangerous to believe ME is curable. It was always said that the most dangerous time with ME was when you felt a bit better as we are so desperate to have a life we do too much even on a small scale.

4. Research has consistently shown that people at the clinics have a 50% chance of not having ME. This means that being told by a doctor that you have ME, especially a BPS one is not terribly reliable. There must be people who get better but never had ME just by that statistic.

Just because someone says they have had ME and are now better does not mean we have to believe them. Let's face it we have all met people who feel they are better than us because they had ME but fought it and are now cured and if we were not so self indulgent we could be cured too.

And we have all met people who say they have ME but do not have any of the symptoms, just fatigue.

It is tricky. I am sure we all worry that a test will be found but we won't be positive. If only a few of us are left will there be anyone to help us fight for a test for our disease? I can see that compassion in the idea of leaving no one behind.

But if someone says they have been completely cured I reserve the right to be sceptical unless I see real proof. Remember Esther Rantzen's daughter who was cured every few years until it was decided she had never had ME? We don't believe every email sent us because of past experience so we don't have to believe something just because someone says it.
 
Kalliope said:
Oh, how I wish that was true, but he said the following to media in April:

Norwegian professor: The criticism has been groundless
Professor Vegard Bruun Bratholm Wyller believes the report from the British health authorities supports that the criticism of the PACE study has been unfounded. He is a senior consultant at the Children's and Youth Clinic at Ahus.
"This criticism appears to be scientific, but in reality it's characterised by a campaign aimed at weakening the credibility of the PACE study. The report that is reproduced in BMJ is only about ethical / legal aspects, but the researchers behind the PACE study have recently answered in depth - and very convincingly - on the methodological objections, he writes in an email to forskning.no.

This was in an article at the news site forskningno declaring that there were no serious faults in the PACE trial after all.
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Yes, I have no doubt he still supports PACE. But even so, neither PACE or Cochran have been used much as arguments lately?

This is the first time I remember the NHS beeing brought up to support claims. I would guess the bad press around PACE and Cochrane might have something to do with that. No ready in the public counter-article that journalist might link to for instance, that could weaken his claims. And the NHS will sound trustworthy to health pofessionals.

It's a tiny step, but I still count that as some progress? :) (now we just need the UK to change their guidlines... fingers crossed!)
 
Mithriel said:
That sounds very good and I would like to be wholehearted about it. I would be reluctant to tell anyone I did not think they had ME but there are good reasons why we have to consider the matter.

1. There is a script for selling "treatments" to us. It goes "I was very sick, bedridden, in a wheelchair. My sister/ parents/friend/other suggested I try XYZ. I was very sceptical but they kept on and I thought I had nothing to lose. To my amazement I am now well again. I couldn't keep my good fortune to myself so I am now treating other ME patients like me for a large amount of money" Well I added the last bit!

2. Maybe there does exist an illness which matches the BPS idea of ME and FNDs and which can be cured by CBT and GET. That is not ME even if there is a superficial likeness.

3. Before CFS, ME was distinguished from post viral states and EBV cases which lasted for a prolonged time. These tended to resolve in a year or two. The cases of ME where people have recovered and are now climbing mountains with no ill effect are usually people who were very ill at the beginning, bedbound or wheelchair users who had EBV.

It is more common for people who have ME to think they are better but are just in remission. They overdo things and end up worse than before. My own view is it is dangerous to believe ME is curable. It was always said that the most dangerous time with ME was when you felt a bit better as we are so desperate to have a life we do too much even on a small scale.

4. Research has consistently shown that people at the clinics have a 50% chance of not having ME. This means that being told by a doctor that you have ME, especially a BPS one is not terribly reliable. There must be people who get better but never had ME just by that statistic.

Just because someone says they have had ME and are now better does not mean we have to believe them. Let's face it we have all met people who feel they are better than us because they had ME but fought it and are now cured and if we were not so self indulgent we could be cured too.

And we have all met people who say they have ME but do not have any of the symptoms, just fatigue.

It is tricky. I am sure we all worry that a test will be found but we won't be positive. If only a few of us are left will there be anyone to help us fight for a test for our disease? I can see that compassion in the idea of leaving no one behind.

But if someone says they have been completely cured I reserve the right to be sceptical unless I see real proof. Remember Esther Rantzen's daughter who was cured every few years until it was decided she had never had ME? We don't believe every email sent us because of past experience so we don't have to believe something just because someone says it.
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Yes I agree with a good deal of this.

1) and 2) I just stick at "if you have symptoms you have ME" (short of an alternative diagnosis), if you then define ME as "the illness I got better from by......, and all other cases should get better by the same means" then you didn't have ME, because that is not an adequate definition of ME. This is the best I can do in terms of accepting the current situation we are in i.e. symptoms = syndrome, while allowing such fanatics to refute their own diagnosis by their own dogmatism, if they choose that line of "reason".

(I think, though, that we have to admit that short of actual myalgic encephalomyelitis, all ME may self refute as ME caused and explained by aretrovirus, a novel immune shift, PEM or what underlies it, Lyme induced autoimmunity etc. can be alternatively classified, relegating ME to a heritage name. In a sense the name really is up for grabs, but it remains imo dubious and logically wrong to grab it for anything while it remains officially a syndrome. The best grab is for PEM but no one knows the cause/s of this nor fluctuations over time, incl remissions, so PEM=ME could have its perils too).

3) I appreciate what you are saying. All I would say is that I return to symptoms as definition of syndrome and find a middle course in making the case that some people with the syndrome achieve control over symptoms for extended periods, but this does not imply definitive cure of the illness. That would seem like a common sense catch all and consistent with different patient psychology.

4) I agree substantially with this point and everything else you write thereafter.

Thanks for your considered response. I appreciate that on a controversial issue.
 
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Interesting that the Norwegian BPS guy sees extreme "ME" as being the same as mild, whereas SW has been raising the question as to whether these are separate illnesses. The hotch potch world of syndromes where any line can be drawn anywhere to define a syndrome........
 
richie said:
I just stick at if you have symptoms you have ME )short of an alternative diagnosis), if you then define ME as "the illness I got better from by......, and all other cases should get better by the same maeans" then you didn't have ME, because that is not an adequate definition of ME. The best I can do in terms of accepting the situation we are in i.e. symptoms = syndrome, while allowing themselves to refute their own diagnosis by their own dogmatism, of they choose that line of "reason".
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The symptom list for ME is a mess and has been made worse by design. Even back before CFS a friend put up a poster for me about the local self help group. He said that everyone who looked at it said they matched the symptoms. Ask anyone at random if they feel fatigued, if they have unrefreshing sleep and if they feel worse after exercise. Most of them will say they do.

It is worse with other sick people. Most do experience fatigue and feel worse after exercise or exertion. This makes it easy for BPS "researchers" to say that CFS is just a symptom and that it is a common thing to have. I am very dubious about papers which claim to have found ME in patients with other diseases. I very much doubt that they use a definition of the disease as we experience it.

The efforts of the establishment over the past 30 years have pushed all the things which are common and stifled debate on how to define what we actually have going wrong with us. We say we have cognitive issues and everyone says they do too, but do they get lost because they can't remember how to get home because they walked a bit too far?

Also the BPS group distort the meaning of words to confuse instead of being precise and use them to have different meanings in different situations. We need a diagnostic test or just the biology of ME to be found to end the confusion.

I don't mean any of this to be a criticism, hard to know how things will read. It is something we should talk about more.
 
I agree, but the problem is knowing who "we" are.
There is a lot of skewed thinking around.
"CFS is made up by Wessely et al"
"We've got a new test for ME and a cure, if you fail you must have CFS, if they can't find anything else. Now I, who have been very ill with real ME, am going to get on with my life"

But CFS has been defined in such minds as W et al's invention so pity the poor patient who is thrown out of "ME" when "we" find a diagnostic test and finds the only door open is the CFS door which has been pre defined by former co sufferers of "ME" in the context of a battle by that point over. Especially true if there is remission, which you say there is, which presumably has some biological parameters. We just don't know enough yet. I assume PEM will be a major player but we need varieties of approaches, tests imo. There may be subgroups of PEM.
 
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It’s hard to find a more biased man than Wyller. Not responsive to anything but own hypothesis and theories, doing “science” the opposite way. Problem fixed is the starting point, then trying to fit the data. It’s a mess that no one really don’t understand.

Then I agree with all import factors that comes into play and partly can contribute and explain remission/recovery and the opposite. To the situation mentioned (wheelchair ME/not real) I would say that both sides may stay cautious and humble. One side should stay away from characteristics. The other side from selling a solution to all and everyone.

Vogt uses this argument over and over again, patient “Y” “was one of the sickest”, sort of to promote that these people have been really ill, but they were cured by a quite simple cognitive intervention. At first, no one doubts that people have been ill. The other one might be more questionable, ref the many co-existing factors that potentially can play a major part. As I see it, the “one of the sickest” is sort of an invalid argument, at least a bad one. But this is emphasized in every circumstance when referring their anecdotes.

Point is, if ME, I would say that the dark room-situation may just be what patient X need for a period of time at that time in the disease, early on. That may be just what is needed, increasing the chance of a better outcome, but then remission/recovery is getting explained rather biased and cathegoric. We know of so many stories the other way around. Patients being at least as sick as “one of the sickest”, but not dark room 24/7, but ending up there or pretty close.
 
Hi Peter
What does "the sickest" in this context mean anyway? Most symptomatic would be better, but what of? A question which in the world of psycho fundies is disallowed so no one gets the wrong attitude, because apparently it works for some fro whom they are willing to sacrifice the others - as you say science the wrong way round.

On the other hand I don't think "its unscientific nonsense" is an adequate response because placebo vs nocebo does not have to be scientific, it just has to work.

I wonder how "sick", "ill", "condition", "illness", "sickness", "disease" play out over various languages. Massive room for categorical confusion, I bet.
 
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Short summary:

The letter is about a large Norwegian study that followed up on adolescents with an Epstein-Barr virus (EBV) infection. The study confirmed that the prevalence of ME/CFS was increased after EBV-infection, a finding that has been reported by several research groups. The authors did interesting analyses on the factors that determine whether adolescents remain ill after EBV-infection, but unfortunately, they didn’t focus on ME/CFS but on lingering fatigue symptoms. So that’s what my letter is about. “Longitudinal studies that use a larger sample of ME/CFS patients and a more precise definition of PEM might give us more insight into why some adolescents do not recover from EBV-infection.”
 
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