New German guideline for ME published today

Joh said:
It's also interesting that in the infamous letter from Frau Klasing in the Methodenreport, she only writes as "I" (as in "I think", "in my opinion"). .
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yet she signed it "chairwoman of Fatigatio"...
the whole letter reads very strange, including cringe-worthy references to tobacco epigenetics and a shared month of birth with the Head of DEGAM and describing other activists as lacking "respect and decency". It almost appears af if a private correspondence was leaked, possibly intentionally to provoke reactions.

then there is also the fact that the new guideline text was released clandestinely on DEGAM's site, that is none of the participating organizations seem to have been notified; add to that Lost Voices Stiftung's contributions were completely omitted in the new report, they had done excellent work in critiquing the previous guideline text.
and on AWMF's site (which is responsible for publishing) it states the guideline paper is still in review:
http://www.awmf.org/leitlinien/detail/ll/053-002.html
this is all very strange...

as for German pwME not showing much presence I suppose there's both a lack of being informed but also German mentality.
I would describe it as complaining much but not being ready to stand up and do much, not even protest until one feels safe in a crowd...
 
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Apparently Frau Klasing has also found what everyone else worldwide is searching for, a marker:
The cause seems to be a change in the NR3C1 gene. This is one of the few markers that are meaningful.
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My mother went to the last Fatigatio conference as I'm homebound and came back with these adventurous stories about genes that have been identified (and some lessons on positive thinking). I even bought the DVD from the conference but don't dare to watch it as I expect it to be too upsetting.
 
YaS said:
I would describe it as complaining much but not being ready to stand up and do much, not even protest until one feels safe in a crowd...
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Yep. :) it makes it difficult, but it cannot be changed. There might be the risk of being called 'militant', which is mixed up with determination, but I actually don't care.

I am just so happy about this discussion here; at least for me a premiere.
 
The cause seems to be a change in the NR3C1 gene. This is one of the few markers that are meaningful.
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That was very strange to me. Does anybody know the publications and can link? It sounded like a direct contradiction to other findings. Furthermore, it reminded me of Prof. Stark's theory about an overactive amygdala being the cause, leading to high cortisol levels and thus to chronic stress blah, blah, blah.
 
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Inara said:
That was very strange to me. Does anybody know the publications and can link?
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Klasing does not bother to cite a source.
A quick google search for "Cortisolachse, NR3C1, CFS" however will turn up a number of articles on stress, childhood trauma, epigenetic predispositions, psychosomatic stuff and so on...
 
Inara said:
That was very strange to me. Does anybody know the publications and can link? It sounded like a direct contradiction to other findings. Furthermore, it reminded me of Prof. Stark's theory about an overactive amygdala being the cause, leading to high cortisol levels and thus to chronic stress blah, blah, blah.
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There was this old paper by Reeves et al, However this is the infamous Wichita cohort.

https://www.ncbi.nlm.nih.gov/pubmed/16740143
 
Thanks @ukxmrv. What does that mean, "infamous Wichita cohort"?

Edit: The authors don't sound German. The statement suggested German geneticists and microbiologists made publications.
 
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YaS said:
Klasing does not bother to cite a source.
A quick google search for "Cortisolachse, NR3C1, CFS" however will turn up a number of articles on stress, childhood trauma, epigenetic predispositions, psychosomatic stuff and so on...
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Yes, that's how it sounded, given the context.
 
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Inara said:
Yes, that's how it sounded, given the context.
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to me it seemed like she made it out to be a self-evident fact:
"In particular, it is also known that cortisol axis is altered in CFS patients. The cause seems to be a change in the NR3C1 gene. This is one of the few markers that are meaningful."

a few paragraphs above she wrote:
"Further studies are also interesting, which show that early childhood trauma or stress during pregnancy, as well as environmental stress factors, change the genes by methylation, partly up to future generations.
http://www.pharmazeutische-zeitung.de/index.php?id=6438"

Note that citing a pharmacist newspaper article is close to a joke about useless advice in German in itself
("Tipps aus der Apothekenzeitschrift")...

I doubt Klasing meant this Belgian paper from 2017:
https://www.ncbi.nlm.nih.gov/pubmed/29275786

we will probably never know.
 
YaS said:
I doubt Klasing meant this Belgian paper from 2017:
https://www.ncbi.nlm.nih.gov/pubmed/
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Although absolute methylation differences were small, the present study confirms our previous findings of NR3C1-1F DNA hypomethylation at several CpG sites in CFS patients as compared to controls.
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I don't get it. If the methylation differences were small, how can you say that
In conclusion, we replicated findings of NR3C1-1F DNA hypomethylation in CFS patients versus controls. Our results support the hypothesis of HPA axis dysregulation and enhanced GR sensitivity in CFS.
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And how can you prove without a doubt that (childhood) trauma are the cause of DNA methylation?
 
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Inara said:
And how can you prove without a doubt that (childhood) trauma are the cause of DNA methylation?
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just to be clear, I did not mean to say any such studies had any relevance. It was just the most recent one of this particular BPS flavor I found. I'm pretty sure everything in this vein crumbles as soon as criteria for patient selection are revealed...

as you pointed out this cortisol axis idea seems several years old...

meanwhile, that ridiculous Klasing letter seems to have caused quite some discussion. it was related that she claimed an "accidental publication" as if that made those statements any more excusable for the head of the largest patient organization...
 
Inara said:
Thanks @ukxmrv. What does that mean, "infamous Wichita cohort"?

Edit: The authors don't sound German. The statement suggested German geneticists and microbiologists made publications.
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The CDC did an expensive population based study of CFS, ringing random people and asking them about symptoms, but there are concerns that they used an overly loose criteria for 'CFS', and so there are questions about whether the data they collected is of any value: https://www.ncbi.nlm.nih.gov/pubmed/12860574

YaS said:
meanwhile, that ridiculous Klasing letter seems to have caused quite some discussion. it was related that she claimed an "accidental publication" as if that made those statements any more excusable for the head of the largest patient organization...
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Interesting. Thanks for letting us non-Germans know.
 
YaS said:
just to be clear, I did not mean to say any such studies had any relevance
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I understood that. I was referencing to this study. To me, it seems far fetched to make a correlation between childhood trauma abd a certain DNA's changes without further research. There are hundreds of other possibilities why there are DNA changes.
 
Inara said:
Thank you, @Esther12!

Edit: What is the problem with that study?
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I've forgotten a lot of the details now, and it was a bit before my time anyway so I don't think I ever properly looked into it myself. I think that part of the contgroversy was that a huge % of CDC CFS research funding was spent on something of really questionable value.

I've just dug up some comments from pubmed from @Tom Kindlon on this, and it makes it all the more annoying that these comments are soon to be removed from easy view.

Why is this definition being referred to as an "empirical definition"?
(This was originally posted here http://www.biomedcentral.com/1741-7015/3/19/comments#301566 but the formatting has gone from that page)

I believe most people's understanding of "empirical criteria" or an "empirical definition" would be that the data would speak for itself; it "would decide" the cut-off points through methods such as cluster analysis (for example).

Indeed this would seem to have been William Reeves' understanding of an empirical definition. For example, in a presentation on the CDC's CFS research program (to a Task Force Meeting on the Epidemiology of Interstitial Cystitis)[1], he said: "The problem with the CFS criteria was that they were not specific enough and not empiric-based. For example, one of the criteria stated that the research subject must have at least four of eight symptoms, among them, impaired concentration or memory and postexertional worsening of physical or mental fatigue. "The accompanying symptoms need to be defined in and of themselves," Dr. Reeves said.

The 1994 International Study Group also hypothesized that fatigue led to patients' symptoms rather than the reverse. The CDC is currently conducting population studies to develop an empiric definition of CFS that is based on statistical modeling."At the inaugural meeting of the US Department of Health and Human Services' Chronic Fatigue Syndrome Advisory Committee (CFSAC), Dr Reeves said the CDC team of research would "derive an empirical case definition based on data".[2]

The definition presented here does not seem to have been based either on "statistical modeling" or "data". It seems to involve relatively arbitrary cut-off points; for example, of the 8 subscales of the SF-36, four are chosen and, for each of these, the 25th percentile of the published US population is chosen as a cut-off point. A patient is required to be in the bottom quartile for just one of these subscales to satisfy the criteria. Where did this cut-off point come from? There is no mention of it in the paper that suggested the use of the SF-36[3]; nor is there any mention that these particular subscales should be chosen or that one would be sufficient. One of the authors of the paper[3] has confirmed that cut-off points were never chosen nor was it decided which sub-scales would be used.

Given that the CDC's definition of CFS tends to go on to be used in numerous studies, would it not be better to investigate which thresholds give a "better" definition e.g. with a higher specificity and sensitivity - for example, for some of the SF-36 subscales, perhaps (say) the 13th, 15th, 20th or even 30th percentiles may be more appropriate.

The cut-off points suggested in this paper may or may not be useful. But is it really accurate to suggest that they are "empirically" derived?

References:

[1] Epidemiology of Interstitial Cystitis - Executive Committee Summary and Task Force Meeting Report October 29th, 2003. http://www.niddk.nih.gov/fund/reports/ic/task_force_summary.pdf

[2] US Department of Health and Human Services - Chronic Fatigue Syndrome Advisory Committee (CFSAC). Inaugural Meeting. September 29th, 2003Meeting Summary. http://www.hhs.gov/advcomcfs/CSFAC_mins_2003.09.29R.pdf

[3] Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER, International Chronic Fatigue Syndrome Study Group: Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Services Research 2003, 3:25
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This may not be a representative group of those who would be diagnosed in a random sample using the "standardized clinically empirical criteria"
(This was originally posted here http://www.biomedcentral.com/1741-7015/3/19/comments#290587 but the formatting has gone from that page)

This "empirical" method of operationalizing the CDC 1994 CFS criteria[1] has subsequently been used in a population study[2]. It found a prevalence rate for CFS of 2540 per 100,000 persons 18 to 59 years of age[2].

This is considerably higher than the prevalence rates found in earlier studies.

For example, a previous study using this cohort using a "previous" method of operationalizing the CDC 1994 CFS criteria[1] found a prevalence rate of 235 per 100,000[3]. Given the way the cohort in this current study was drawn up, using 58 people who had previously been diagnosed using a "previous" method of operationalizing the CDC 1994 CFS criteria, the group satisfying the new method of operationalizing the CDC 1994 CFS criteria, the "empirical" criteria, in this study may well not be the same sort of people that would show up if the method was used on a random sample of the population. So for example the results in Table 6 may not be similar to the results one can get in a random sample.

Unfortunately the paper giving the prevalence rate for Georgia[2] does not give the same pieces of information as is in Table 6 in this study. However we do have a paper which uses a group from the Georgia cohort[4]. Table 1 of this study[4] includes similar data. Some of the numbers are somewhat similar. However one that particularly stands out is the Role Emotional score. It was 35.6 (95% CI: 26.3-44.8). That compares to the value in this paper of 55.8+/-42.2.

Perhaps other data will be published in time. The main point of this comment is to point out or remind people that the data presented in this paper may not be representative of those that would be diagnosed using the empirical criteria.

References:

[1] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, & Komaroff A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121 (12):953-959. http://www.annals.org/cgi/content/full/121/12/953

[2] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Population Health Metrics 2007, 5:5 doi:10.1186/1478-7954-5-5http://www.pophealthmetrics.com/content/5/1/5

[3] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

[4] Nater UM, Maloney E, Boneva RS, Gurbaxani BM, Lin JM, Jones JF, Reeves WC, Heim C. Attenuated Morning Salivary Cortisol Concentrations in a Population-based Study of Persons with Chronic Fatigue Syndrome and Well Controls. J Clin Endocrinol Metab. 2007 Dec 26
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https://www.ncbi.nlm.nih.gov/pubmed/16356178/#comments

Additional comments are currently available at the above link, and also at:

https://www.ncbi.nlm.nih.gov/pubmed/17109739/#comments

https://www.ncbi.nlm.nih.gov/pubmed/19804639/#comments
 
Here is what the TK (a German health insurer) says about treating "CFS":

It is often useful to have psychotherapy such as cognitive behavioral therapy, with which demonstrable improvements can be achieved.

In addition, diet and physiotherapy and appropriate exercise are recommended. Patients should not go over their load limit, but also not be under-challenged. A positive effect has a physical training under guidance, in which the physical activity is gradually increased. A lack of exercise, however, aggravates a chronic fatigue syndrome.
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