Chronic fatigue syndrome/myalgic encephalo-myelitis – pathophysiology, diagnosis and treatment

[alex3619]

or perhaps "psychogenic speculations"?

I like it.

 

[sorin]

Not sure if this is CBT but at some point I saw this site http://kyledavies.net/ of Kyle Davies from UK who pretends to do some psycho-therapy that "offers permanent solution to CFS". Only the high price of a few skype sessions prevent me from benefit of his conversational cure. Anyone tried that? Anyone has any opinion about Kyle Davies? Seems there are a few good reviews on the internet about him.

 

[Aurator]

This is from his website:

"If you are a sufferer of Chronic Fatigue Syndrome/ ME, Fibromyalgia, Post Viral Fatigue or other medically unexplained symptoms of fatigue, pain or digestive problems, this membership program is for you. The program walks you through a comprehensive process that address the cause of your symptoms while giving you all you need to see a complete cessation of those symptoms.

The purpose of this membership program is to carefully guide you back to health, walking you step by step through the process that addresses the blockages and imbalances within the body that result in the presence of symptoms.

The theory and methods I will teach you work directly with the CAUSE of symptoms by identifying and unblocking the emotional system and recoding emotional memory.

Simply put, your natural state of being is to be healthy and happy. This program enables you to return to that state and embrace an expanded sense of self, the full YOU. As you return to YOU and fully experience yourself your body will return to it’s desired natural state of health and wellness."

Anyone has any opinion about Kyle Davies?

Yes: he's exploiting vulnerable patients for financial gain by targeting the current void left by medical science.

And wrapping up a disclaimer re recovery in positive spin only makes his approach all the more distasteful: "As with all my work the emphasis is on empowerment. This is a process where I teach you how to take charge and heal yourself."

 

[Valentijn]

Anyone has any opinion about Kyle Davies?

Quack.

 

[sorin]

Quack.

I would like to hope that human body can recover and heal by itself. But it has to he helped somehow to do this, using medicaments or other kind of therapy... Is just a hope...

 

[lansbergen]

I would like to hope that human body can recover and heal by itself. But it has to he helped somehow to do this, using medicaments or other kind of therapy... Is just a hope...

It usely can but not always and then it needs help.

 

[mango]

A comment by Saugstad has been published now

(See below for the Google translated version)

RE: Kronisk utmattelsessyndrom/myalgisk encefalopati - sykdomsmekanismer, diagnostikk og behandling

22.12.2015

Bruun Wyller og medarbeidere oppsummerer i Tidsskriftet sin forståelse av myalgisk encefalopati (ME) som en vedvarende stressrespons (1). Kronikken må forstås som en kommentar til Egeland og medarbeidere om ME hvor vi oppsummerer internasjonal status for sykdomsforståelsen (2). Den største synteserapporten som foreligger, fra Institute of Medicine i USA, slår klart fast at ME er en biomedisinsk sykdom (3). Det er denne rapporten Bruun Wyller og medarbeidere burde kommentere hvis de er uenig i konklusjonene våre, i stedet for å bruke flere avsnitt på å karakterisere andre deltagere i ME debatten. Rapporten kan sees som et oppgjør med bl.a. Bruun Wyllers syn på ME.

Bruun Wyllers gjennomgang av litteraturen er mangelfull. En ny studie av Horning og medarbeidere viser at cytokinprofilen endres over tid med sykdomsforløpet til ME-pasienter. (4). I Bruun Wyllers egen studie og den refererte meta-analysen er denne tidsfaktoren utelatt. En fersk studie viser at isolerte muskelceller fra ME pasienter responderer annerledes på fysisk stress enn friske kontroller, blant annet ved å ikke ta opp glukose (5). Nylig påviste Loebel og medarbeidere (6) forhøyede antistoffer i serum mot β-adrenerge og muskarin-kolinerge reseptorer hos ME pasienter. Og hvorfor ønsker Bruun Wyller å tone ned betydningen av den lovende Rituximab studien på Haukeland, som trekker i retning av at ME er en autoimmun sykdom?

Studiene om effekten av kognitiv adferdsterapi ved ME er lite overbevisende. PACE studien, som Bruun Wyller oftest refererer til, viser ikke at kognitiv adferdsterapi har bedre effekt enn andre behandlinger, inkludert aktivitetstilpasning. Ved for eksempel 6 min gangtest gir kognitiv adferdsterapi behandling en økning på 20 meter i forhold til aktivitetstilpasning, men fortsatt er pasientgruppen på et svært lavt funksjonsnivå (7). Det er i tillegg en rekke alvorlige metodiske svakheter med PACE studien. I tillegg rapporterer mange pasienter at de blir dårligere av kognitiv adferdsterapi.

Bruun Wyller og medarbeidere misliker at noen ”i vitenskapelige toppstillinger uttaler seg med skråsikkerhet om et fagområde de verken har klinisk eller vitenskapelig erfaring fra”. Jeg har engasjert meg for ME pasientene fordi jeg har sett hvor dårlig mange av dem behandles. Jeg har i flere år reist rundt i hele landet og besøkt mange av de sykeste pasientene hjemme eller på sykehjem. Mange av dem faller utenfor helsevesenets tilbud. Jeg har jevnlig deltatt på internasjonale ME kongresser de siste 20 årene.

Bruun Wyller og medarbeideres syn på ME representerer gårsdagens forståelse og er slik sett av liten interesse. Problemet er at denne forståelsen har bidratt til manglende utredning og dårlige og misforståtte behandlinger av svært syke pasienter.

Litteratur
1. Wyller VB, Reme SE, Mollnes TE. Kronisk utmattelsesyndrom/Myalgisk encepalopati-sykdomsmemanismer, diagnostikk og behandling. Tidsskr Nor Laegeforen. 2015;135(23-24):2172-2175
2. Egeland T, Angelsen A, Haug R, Henriksen JO, Lea TE, Saugstad OD. Hva er egentlig Myaligisk encepalopati? Tidsskr Nor Laegeforen. 2015;135:1756-1759
3. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Board on the Health of Select Populations, Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. http://iom.edu/~/media/Files/Report% 20Files/2015/MECFS/MECFS_ReportBrief.pdf (2.9. 2015).
4. Hornig M, Montoya JG, Klimas NG et al. Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Sci Adv 2015; 1: e1400121.
5. Brown AE, Jones DE, Walker M et al. Abnormalities of AMPK Activation and glucose uptake in cultured skeletal muscle cells from individuals with chronic fatigue syndrome. Plos One 2015; 19; e0122982.
6. Loebel M, Grabowski P, Heidecke H, Bauer S, Hanitsch LG, Wittke K, et al. Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome. Brain Behav Immun. 2015: S0889-1591(15)30020-9.
7. White PD, Goldsmith KA, Johnson AL et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011; 377: 823 – 36

Professor Ola Didrik Saugstad

Pediatrisk Forskningsinstitutt, UiO og OUS

Oppgitte interessekonflikter: ingen

Here's the Google Translate version:

RE: Chronic fatigue syndrome / myalgic encephalomyelitis - pathophysiology, diagnosis and treatment

12/22/2015

Bruun Wyller and colleagues summarize the journal's understanding of myalgic encephalomyelitis (ME) as a sustained stress response (1). The article must be understood as a comment on Egeland and colleagues about ME where we summarize international status of disease understanding (2). The main synthesis report that has been presented by the Institute of Medicine in the United States, clearly states that ME is a biomedical disease (3). It is this report Bruun Wyller and employees should comment if they disagree with our conclusions, instead of using several paragraphs to characterize other participants in ME debate. The report can be seen as a showdown with ia Bruun Wyller views on ME.

Bruun Wyller review of the literature is lacking. A new study of Horning and colleagues show that cytokine profiles change over time with the disease to ME patients. (4). In Bruun Wyller own study and the referenced meta-analysis is the time factor omitted. A recent study shows that muscle cells isolated from ME patients respond differently to physical stress than healthy controls, including by not absorb glucose (5). Recently discovered Loebel and colleagues (6) elevated antibodies in serum against β-adrenergic and muscarinic cholinergic receptors in ME patients. And why would Bruun Wyller to downplay the importance of the promising Rituximab study at Haukeland, which suggests that ME is an autoimmune disease?

The studies on the effect of cognitive behavioral therapy in ME is unconvincing. PACE study, that Bruun Wyller most often refers to, does not show that cognitive behavioral therapy is more effective than other treatments, including activity adaptation. For example, 6 min walk test provide cognitive behavioral therapy treatment an increase of 20 meters relative to activity adaptation, but still patient population at a very low level of functioning (7). There are in addition a number of serious methodological weaknesses with PACE study. In addition, reports many patients that they become poorer of cognitive behavioral therapy.

Bruun Wyller and employees resent that someone "in top academic positions makes statements with absolute certainty about a subject they have neither clinical or scientific experience." I have engaged me for ME patients because I have seen how poorly many of them treated. I have for several years traveled around the country and visited many of the sickest patients at home or in nursing homes. Many of them fall outside the healthcare offerings. I have regularly participated in international congresses ME the last 20 years.

Bruun Wyller and employees' views on ME represents yesterday's understanding and as such is of little interest. The problem is that this understanding has contributed to a lack of investigation and bad and misguided treatments of very ill patients.

http://tidsskriftet.no/article/3431709#comments