Europe & Scandinavia

 

The Norwegian Public Health Institute's controversial ME-science
The Norwegian Public Health Institute's assignment is to share quality-assured information, advise on public health and prevent illness and health damage. When it comes to the illness ME, however, NPHI refers to controversial science that aggravates the situation for patients. Written by Nina E. Steinkopf, 30.09.2019, author of www.melivet.com

https://melivet.files.wordpress.com/.../the-norwegian...
Discussion:

https://www.s4me.info/.../a-messiah-in-the.../page-2...

 

 

European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

http://www.euromene.eu/workinggroups/minutes/Minutes_Barcelona-Cost_16-17March2017.pdf

 

Frank Twisk

https://loop.frontiersin.org/people/130537/overview?fbclid=IwAR1vzF-qpQPm5z6LIYHtxXQAP0xkdMDNlgIDbbL6h8kz1d1K7CogI_Oi_2U

 

From Norway:  What exactly is myalgic encephalomyelitis? 

Although there are good diagnostic criteria for myalgic encephalomyelitis, knowledge of the disease is often lacking and this can result in misdiagnosis and incorrect treatment. There is a need for more research, greater expertise among clinicians, and refinement of the diagnostic criteria.

We are six professors who, in different ways, are all involved in issues related to myalgic encephalomyelitis. Some of us are medics and scientists who participate actively in research into the condition, while others are social scientists or ethicists who have taken a critical look at the literature in the field from a social and socio-medical perspective.

https://tidsskriftet.no/en/2015/10/what-exactly-myalgic-encephalomyelitis?fbclid=IwAR3SBqBZcxLoyTpVMqJu4vKZEqShP33Fq7rbw9Bo18VMbI3laLExcRqHsQo

 

 

Seuraava täysistunto   Finland ME and CFS guidelines
tiistaina klo 14Ainoassa käsittelyssä lapsiasiavaltuutetun kertomus 2018.

Istuntoa voi seurata suorana verkkolähetyksenä. Siirry täysistuntosivulle.

https://www.eduskunta.fi/fi/Sivut/default.aspx?fbclid=IwAR3Y7WR6Gt2lg5of-IZd2BGfFZhdq_iM2iHwVTyYzxSMbUfV7VfT2pFiMgM

 

 

 

Dutch Health Council Advisory Report on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome: Taking the Wrong Turn

Frank Twisk

Recently, the Dutch Health Council published their advisory report on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) which is meant to determine the medical policy with regard to ME in the Netherlands. The Health Council briefly discusses several diagnostic criteria and proposes to use new diagnostic criteria for “ME/CFS” in research and clinical practice in the future. The advisory report then summarizes organic abnormalities observed in the last decades and concludes that “ME/CFS” is a “serious, chronic, multisystem disease”. According to the Health Council there are no curative treatments for “ME/CFS”, due to lack of knowledge, but specific medication could bring symptomatic relief. The Health Council recommends conducting more research, to (re)educate medical professionals about “ME/CFS”, to appoint three academic expertise centres, which will install a care network for patients, and to fairly judge the limitations (disability) of patients when they apply for a disability income, medical aid and care. The advisory report was welcomed by many patients, because it puts an end to the dominance of the (bio)psychosocial explanatory model and seems to offer a perspective of improving the situation of patients. However, the starting point of the advisory report, a new definition of “ME/CFS”, will have serious (long-lasting) consequences for patients and researchers.

http://www.mdpi.com/2075-4418/8/2/34

Frank Twisk - Aug 2018

Some authors seems to bet on two horses:  the biomedical and the BIOPSYCHOSOCIAL model.

Yes, I get stressed by these type of studies.  Why not investigating the inverse relationships?

Depression, evening salivary cortisol and inflammation in chronic fatigue syndrome:                                                                       A psychoneuroendocrinological structural regression model.
Int J Psychophysiol. 2017 Sep 14. pii: S0167-8760(17)30162-9. 
doi: 10.1016/j.ijpsycho.2017.09.009. [Epub ahead of print]
Milrad SF, Hall DL, Jutagir DR, Lattie EG, Czaja SJ, Perdomo DM, Fletcher MA, Klimas N, Antoni MH.

 

Abstract

Introduction:

Chronic Fatigue Syndrome (CFS) is a poorly understood illness that is characterized by diverse somatic symptoms, hypothalamic pituitary adrenal (HPA) axis dysfunction and heightened inflammatory indicators.

These symptoms are often exacerbated and accompanied by psychological distress states and depression.

Since depression is known to be associated with HPA axis dysfunction and greater inflammation, 
a psychoneuroendocrinological (PNE) model of inflammation was examined in persons diagnosed with CFS 
in order to uncover underlying biopsychosocial mechanisms in this poorly understood chronic illness.

 

Methods:

Baseline data were drawn from two randomized controlled trials testing the efficacy of different forms of psychosocial intervention, and included psychological questionnaires, diurnal salivary cortisol, and blood samples.

Data were analyzed with structural equation modeling (SEM).

Results:

The sample (N=265) was mostly middle-aged (Mage=49.36±10.9, range=20-73years), Caucasian (67.7%), female (81.7%), 
highly educated (85.5% completed some college, college, or graduate program), and depressed (CES-D M=23.87±12.02, range 2-57).  T
he SEM supporting  psychoneuroendocrinological model of immune dysregulation in CFS fit the data χ2 (12)=17.725, p=0.1243, RMSEA=0.043, CFI=0.935, SRMR=0.036.

Depression was directly related to evening salivary cortisol and inflammation, such that higher evening cortisol predicted 
greater depressive symptoms (β=0.215, p<0.01) and higher pro-inflammatory cytokines (interleukin-2 [IL-2], IL-6, and 
tumor necrosis factor-alpha [TNF-α] levels (β=0.185, p<0.05), when controlling for covariates.


Discussion:

Results highlight the role of depression, cortisol and inflammation in possible biological mechanisms involved in the pathophysiology of CFS.  Time-lagged, longitudinal analyses are needed to fully explore these relationships.

Keywords:

Chronic fatigue syndrome (CFS); Depression; Evening cortisol; Inflammation; Structural equation modeling

PMID: 28918107

PMCID: PMC5851813 [Available on 2019-03-14]

DOI: 10.1016/j.ijpsycho.2017.09.009

https://www.facebook.com/frank.twisk/posts/10211917380119083?hc_location=ufi

 

 

 

 

July 16th, 2018

Vloeken in de (biopsychosociale) kerk. Dat doen Paul Enck en Nazar Mazurak van de afdeling

Psychosomatiek van de Universiteit van Tübingen met hun recent gepubliceerde artikel

 

Op basis van een analyse van 1.302 studies naar de gevolgen van darminfecties en andere infecties,

concluderen zij dat het effect van psychosociale factoren op de uitkomst, zeer beperkt/nihil is.

Hun analyse richtte zich met name op het prikkelbaar darmsyndroom en 'CVS' (gezien hun overlap)

 

De conclusie van de auteurs liegt er niet om:

 

Als hun bevindingen kloppen dan is de zoektocht naar psychologische en sociale factoren

die zouden verklaren waarom de één wel en de ander niet ziek wordt na een infectie, misleidend,

omdat die inspanningen afleiden van het onderzoek van de oorzaken van de biologische afwijkingen.

 

Zij stellen voor om, in lijn met de oorspronkelijke insteek van het (bio)psyschosociale model,

de biologische factoren weer op de eerste plaats te zetten, omdat die de ziekte(n) verklaren.

The "biology-first" hypothesis:

Functional disorders may begin and end with biology -

A scoping review.

Neurogastroenterol Motil. 2018 Jun 28:e13394. doi: 10.1111/nmo.13394.

Enck P, Mazurak N.

 

 

Key Points

  • It is common knowledge that gastrointestinal infections can cause functional disturbances in the upper and lower gastrointestinal tract.

  • We hypothesize that intestinal infections can also induce functional non-intestinal diseases and that non-intestinal infections can provoke chronic intestinal and extra-intestinal dysfunctions.

  • This implies that the role of biological processes should be considered as domi­nant in a biopsychosocial model of certain functional gastrointestinal disorders.

  • We called this the 'biology-first hypothesis' that needs further and future prospective validation

http://www.hetalternatief.org/Biopsychosociaal%20Verklaringsmodel%20Tegengeluid%20Enck%202018%201462.htm

........................

May 17th, 2018

Recently, the Dutch Health Council published their advisory report on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) which is meant to determine the medical policy with regard to ME in the Netherlands. The Health Council briefly discusses several diagnostic criteria and proposes to use new diagnostic criteria for “ME/CFS” in research and clinical practice in the future. The advisory report then summarizes organic abnormalities observed in the last decades and concludes that “ME/CFS” is a “serious, chronic, multisystem disease”. According to the Health Council there are no curative treatments for “ME/CFS”, due to lack of knowledge, but specific medication could bring symptomatic relief. The Health Council recommends conducting more research, to (re)educate medical professionals about “ME/CFS”, to appoint three academic expertise centres, which will install a care network for patients, and to fairly judge the limitations (disability) of patients when they apply for a disability income, medical aid and care. The advisory report was welcomed by many patients, because it puts an end to the dominance of the (bio)psychosocial explanatory model and seems to offer a perspective of improving the situation of patients. However, the starting point of the advisory report, a new definition of “ME/CFS”, will have serious (long-lasting) consequences for patients and researchers.

http://www.mdpi.com/2075-4418/8/2/34

...............................

 

 

Frank Twisk

GR-rapport over chronische-vermoeidheidssyndroom

KANTTEKENINGEN BIJ DE BELANGRIJKSTE PUNTEN UIT GR-RAPPORT ME/CVS

COMMENTAAR,  23-03-2018

Jos W.M. van der Meer, Megan E. Roerink en Elise M. van de Putte

Yesterday our reaction appeared on  A comment from Prof. Jos van der more and others
The Health Council of the Netherlands on the website of Dutch Magazine for medicine.

A reaction from the authors will (probably) will soon be published online.

https://www.ntvg.nl/artikelen/gr-rapport-over-chronische-vermoeidheidssyndroom/reacties#comment-7634

............................................

Via Frank Twisk

Yesterday our reaction appeared on a comment from Prof. Jos van der more and others, The Health Council of the Netherlands.  On the website of Dutch Magazine for medicine.  A reaction from the authors will (probably) will soon be published online.

https://www.ntvg.nl/artikelen/gr-rapport-over-chronische-vermoeidheidssyndroom/reacties#comment-7634

Letters from Prof. Rien Vermeulen, Ardent Advocate of the (Bio) Psychosocial desires; and The husband of a patient with chronic vermoeidheids syndroom ("Restdiagnose")  Who recites the (Bio) Psychosocial tekstboekjes  " the therapy took a possible biological Cause may not be gone but the treatment
It did help, though.
The Nrc published (only) one critical letter, That of maya leutwiler who deteriorated by cgt.


https://www.nrc.nl/nieuws/2018/03/31/brieven-3132018-a1597778

...........................................

 

For Video presentation online

Myalgic Encephalomyelitis, chronic fatigue syndrome, and Systemic Exertion Intolerance Disease: 
Three distinct clinical entities Challenges 2018, 9(1), 19; doi: 10.3390/challe9010019.
Frank Twisk  
 http://www.mdpi.com/2078-1547/9/1/19

 

Many researchers consider chronic fatigue syndrome (CFS) to be a synonym of Myalgic Encephalomyelitis (ME). However, the case criteria of ME and CFS define two distinct clinical entities. Although some patients will meet both case criteria, other patients can meet the diagnosis of ME and not fulfil the case criteria for CFS, while the diagnosis of CFS is largely insufficient to be qualified as a ME patient. ME is a neuromuscular disease with distinctive muscular symptoms, including prolonged muscle weakness after exertion, and neurological signs implicating cerebral dysfunction, including cognitive impairment and sensory symptoms. The only mandatory symptom of CFS is chronic fatigue. Chronic fatigue must be accompanied by at least four out of eight nonspecific symptoms: substantial impairment in short-term memory or concentration, a sore throat, tender lymph nodes, muscle pain, multijoint pain, a new type of headaches, un-refreshing sleep, and post-exertional “malaise” lasting more than 24 h. So, regardless whether the name ME is appropriate or not, ME is not synonymous to CFS. That is not a matter of opinion, but a matter of definition. Due to the definitions of ME and CFS, “ME/CFS” does not exist and cannot be replaced by a new clinical entity (SEID: Systemic Exertion Intolerance Disease), as recently suggested.
High resalution video below the abstract

............................................

 

Jammer maar nodig deze oproepIedereen is zoals verwacht betrokken bij het feit dat er nu een rapport van de Gezondheidsraad ligt. En de meesten onder ons vinden het vervolg spannend.  Maar wat nu gebeurt is dat mensen in het wilde weg naar kamerleden schrijven die niet eens bekend zijn met de problematiek. Daarnaast worden oproepen op onder andere twitter gedaan om de kamerleden zoveel mogelijk mails te zenden.
We hebben begrip voor frustraties maar in het wilde nu gaan schrijven werkt contra-productief.  De VWS-cie heeft reeds besloten het rapport door te voeren aan de regering (wat neerkomt op de minister van VWS) om diens mening er over te vragen.  De commissie krijgt dan een advies binnen.  Dat hoeft men niet op te volgen. Het is alleen raadgevend.  Reden te meer het verstand erbij te houden i.p.v. gehoor te geven aan emoties.

Uiteraard is er reeds gecoördineerde actie ondernomen.

 

Pity but need this call
Everyone is, as expected, involved in the fact that there is now a report from the health council. And most of us find the sequel exciting.
But what is happening now is that people in the wild are writing to mps who are not even familiar with the problem.
In addition, calls are made, among other things, to send the mps as many e-mails as possible.  We understand frustration, but in the wild now writing is working counter-productive.  The Vws-Cie has already decided to carry out the report to the government (which represents the minister of vws) to ask for his opinion.  The Commission will then receive an opinion.  There is no need to follow that. It's just advisory.  All the more reason to keep common sense instead of responding to emotions.  Of course, coordinated action has already been taken.

https://www.facebook.com/MEVerenigingNederland/posts/1757064514350202?hc_location=ufi

"Waarom het advies van de Gezondheidsraad niet het vertrekpunt kan zijn."

" why the advice of the health council cannot be the starting point."

http://www.hetalternatief.org/Kritiek%20GR%20advies%202018.pdf

https://www.facebook.com/MEVerenigingNederland/posts/1760103817379605?hc_location=ufi

 

Remember MEICC is not ME/CFS

Myalgic Encephalomyelitis & Chronic Fatigue Syndrome

March 19th 2018

https://www.gezondheidsraad.nl/en/task-and-procedure/areas-of-activity/optimale-gezondheidszorg/mecfs

 

 

People with ME or CFS are substantially limited in their functioning, for a longer period of time. Treatment cannot address the causes of the disease, due to lack of knowledge. Therefore, research is required, on pathogenesis, diagnosis and treatment. Furthermore, patients do not feel to be taken seriously, which hampers their recovery. Their limitations are often not fully recognized in the assessment of claims on income and other provisions. The Health Council recommends that health care providers be trained and medical assessors recognize that ME/CFS is accompanied by substantial limitations.

ME/CFS is a serious chronic disease that substantially limits the activities and quality of life of people suffering from it. Patients with ME/CFS have been campaigning for recognition and better treatment of their condition for years. In response to a citizens’ initiative, the Lower House asked the Health Council to provide insight into what is scientifically known about the disease and what developments are to be expected. The ME/CFS Committee investigated this subject. This committee consisted of experts from various fields and patient representatives. Different views on ME/CFS were represented.

 

The disease: symptoms, pathogenesis and diagnosis

People with ME/CFS suffer from a substantial reduction in the ability to engage in pre-illness levels of social and personal activities, which lasts longer than six months. They suffer from severe fatigue that is not caused by exertion and is not substantially alleviated by rest. Minor physical or mental effort can already exacerbate the complaints. Almost all patients have a disturbed sleep. Neurocognitive problems (concentration, memory, comprehension) and orthostatic intolerance (such as dizziness, nausea, headache, weakness) are also common. In addition, pain, fever and enhanced sensitivity are symptoms that may occur.
 

The committee notes that little is known with certainty about the pathogenesis of the disease. Various body systems can be involved, such as the immune system, metabolic system, cardiovascular system, central nervous system, neuroendocrine system, microbiome and genome. Therefore, it is called a ‘multisystem disease’. It is unclear how these systems interact in the development of ME/CFS. There may also be several diseases that fall under ME/CFS.
The diagnosis of ME/CFS is made based on symptoms. There is no agreement in the scientific literature on the criteria that should apply. The committee believes that the diagnostic criteria proposed in 2015 by the Institute of Medicine (currently: National Academy of Medicine) provide for the time being a good tool for practitioners.

 

As with the pathogenesis, there is little to say with certainty about the prevalence and the course of the disease. Presumably, there are 30,000 to 40,000 patients in the Netherlands with ME/CFS, most of whom are female. Their chance of spontaneous recovery is low.

For further information:  

https://www.gezondheidsraad.nl/en/task-and-procedure/areas-of-activity/optimale-gezondheidszorg/mecfs

March 21, 2018

Frank Twisk Researcher for ME

Frank N.M. Twisk MBA MBI BEd BEc is affiliated with the ME-de-patiënten Foundation. Frank does research into ME and CFS and associated diseases. His current project is ' A Review of Dutch studies into the effect of cognitive behavorial therapy and graded exercise therapy in Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS).'

https://www.researchgate.net/profile/Frank_Twisk

March 21, 2018

De ME Vereniging Nederland

Welkom

De ME Vereniging Nederland is de nationale patiëntenorganisatie voor mensen met myalgische encefalomyelitis, een neuroimmuunziekte. Er zijn ongeveer 14.000 Nederlandse ME-patiënten, waarvan 1,5% lid is van de vereniging.

March 21, 2018

An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome requires strict Clinical Case definitions and Objective Test Methods

Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are subject to controversy. Although ME and CFS are often considered to be to be synonymous, the case criteria for ME and CFS define two distinct diseases with partial overlap. ME, recognized as a new clinical entity in the 1950’s, is characterized by distinctive muscular, neurological and autonomic symptoms. In contrast the core feature of CFS, introduced in 1988 and redefined in 1994, is chronic fatigue. Some researchers consider CFS to be equivalent to (incapacitating) chronic fatigue (CF). After the introduction of CFS, other criteria for ME, ME/CFS, CFS and CF were introduced and used in research studies, creating obfuscation and controversy. The use of various diagnostic criteria has hampered effective research into ME and CFS. Next to the various diagnostic criteria, the assessment of symptoms is almost always based on questionnaires and subjective measures, e.g. physical functioning. Due to their nature subjective measures are incomparable over time and between patients. Moreover subjective measures introduce a significant risk of bias, for example due to researcher allegiance, the Hawthorne effect, and buy-in effects. Despite the fact that ME and CFS (subclasses) lack a clear etiological explanation (yet), the symptoms can and should be assessed by objective test measures, since subjective measures are ambiguous, incomparable and minimize the risk of bias. Objective test measures can also confirm the seriousness of both ME and CFS. To resolve the diagnostic issues in research studies and clinical practice, a clear distinction between ME and CFS (not ME), based on the original criteria, is crucial. Although the use of objective test methods is more expensive and time-consuming and severe cases cannot be subjected to these tests, considering the (scientific) confusion originating from the use of subjective measures it is essential to assess the symptoms of patients objectively both in clinical practice and research settings.

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