Germany: "Pschyrembel" adopts ICC

Getting my information for this solely from this tweet, as I can't get Google to translate the website.

Copy and paste link

Code:

https://twitter.com/MECentraal/status/1183809872028209152?s=20

https://twitter.com/user/status/1183809872028209152


Can any German speaker confirm the info above? @TiredSam @Joh

 

The Pschyremebel article does mention the ICC, but at the bottom says "this article last updated August 2018", so I'm not sure what's going on. Also says this:

And has some interesting (and scary) prognisis figures, I don't know where they come from.


Here's a rough translation of the Psychrembel article as it currently stands:

Chronic Fatigue Syndrome

Chronic neuroimmunological systemic disease of unclear etiology. The main symptom is the persistent mental and physical exhaustion (fatigue) up to bedridden as well as other symptoms such as headache and muscle pain, swelling of the lymph nodes and neurological disorders. Diagnosis is made by excluding other diseases. Treatment is symptomatic, causal therapies do not exist. Spontaneous healing is rare.

background

Occurrence:
- partly epidemic occurrence
- Women : Men = 2 : 1
- Prevalence 0.2-0.4
- approx. 300000 affected in Germany, in the USA approx. 4 million, worldwide approx. 17 million
- mean disease age 29-35 years with increasing prevalence in children.

Etiology:
- still unknown, probably multifactorial genesis
- disposition factors
o Infection at a time of high physical activity or stress
o family disposition
o Immunodeficiencies
- triggering factors
o mostly viral infection, e.g. Epstein-Barr virus (especially with later initial infection), enterovirus, dengue virus, herpes simplex virus 1, human herpes virus 6, influenza
o rare bacterial infection (Q-fever, Lyme disease, Chlamydia, Legionella)
o often unspecific respiratory infection
o questionable XMRV (xenotropic murine leukemia-virus-related retrovirus) - not confirmed in several studies
o other preceding events such as pregnancy, accident (in particular trauma to the cervical spine), operation or critical life event such as death of a relative, unemployment, military combat deployment
- disease-supporting factors
o Overload (physical, mental, psychological)
o lack of social support
o (further) infection, operation, accident
o reactive depression.

Pathophysiology:
- Dysregulation of nervous system, immune system and cardiovascular system, on the cellular level disturbances of energy metabolism and ion transport
- described numerous disorders on immunological, neuronal, hormonal and cellular level, but not all disorders are detectable in all patients
o Disturbed immune regulation: e.g. sustained T cell activation, reduced function of natural killer cells (so-called low-natural killer cell syndromes, abbreviated LNKS), lack of immunoglobulins, inadequate EBV-specific B memory cell and T cell response
o neuronal anomalies such as neuoinflammation in extensive brain areas, significantly reduced white matter (as an indication of chronic inflammatory processes), deformation of the right fasciculus arcuatus and thickening of two areas of grey matter in the immediate vicinity of the nerve cord (severity of deformation correlates with severity of clinical symptoms), reduced blood flow to the brain stem and cerebral cortex
o Disturbance of mitochondrial function with deficiency of ATP
o Disturbance of AMP kinase activation and glucose uptake in muscle cells
o Autoantibodies against thyroid proteins, neurotransmitters and receptors (e.g. beta-adrenergic and muscarinergic cholinergic receptors).

Classification:
- according to International Consensus Criteria (ICC)
o mildly ill: activity level reduced by 50% compared to before the illness
o moderately ill: Patients are predominantly tied to the home
o seriously ill: patients are predominantly bedridden
o very seriously ill: patient is completely bedridden and unable to carry out hygiene measures on their own
- in severity grades with point scale according to David S.Bell (see Table 1).

Clinic

- mostly acute onset with flu symptoms, neck, head, muscle and joint pain, pressure-painful lymph nodes, subfebrile temperatures, concentration disorders and increased need for sleep or sleep disorders
- rarely gradual onset and relapsing course
- persistent symptoms with marked exhaustion and limited performance even after 6 months
- characteristic cardinal symptom is so-called post-exertional neuroimmune exhaustion, abbreviation PENE (immediate or delayed worsening of symptoms for hours or days after disproportionate physical or mental exertion)
- neurological manifestations
o pain in the musculature, joints and/or headaches often already after low stress and also at rest
o neurocognitive symptoms such as concentration and memory disorders (so-called brain fog)
o Disturbances of falling asleep and sleeping through; unrestful sleep
o sensory, perceptual and motor disorders such as increased sensitivity to irritation (sensitivity to noise, light, smell and touch), disorders of eye accommodation, muscle weakness, coordination disorders (ataxia), gait insecurity, muscle twitching (myoclonia)
- immunological, gastrointestinal and urogenital impairments
o Increasing allergy (also against medication)
o Food intolerances and irritable bowel problems such as abdominal pain, diarrhoea and constipation in alternation, flatulence and meteorism
o chronic respiratory infections and increased susceptibility to infections (pharyngitis, sinusitis, chesty cough), swollen pressure-sensitive lymph nodes
o Disorders of urination (micturition)
- Disruption of energy production and ion transport
o Disorders of orthostatic regulation, tachycardia, hypotension, palpitation, arrhythmia, dizziness, extreme facial pallor and Raynaud's syndrome
o Shortness of breath, difficulty breathing due to weakness of the thoracic muscles, hyperventilation
o Intolerance to temperature extremes and strong temperature fluctuations
o Loss of thermostatic stability (subnormal body temperature, sweating, cold extremities).

Diagnostic Feedback
- The diagnosis shall be made on the basis of the criteria of the International Consensus Criteria (ICC) if the following criteria are met
o Presence of the cardinal symptom PENE
o at least 1 symptom from the symptom category neurological manifestation (pain, neurocognitive disorders, sleep disorders and sensory-perceptual-motor disorders)
o at least 1 symptom from the symptom category immunological, gastrointestinal and urogenital impairments (see "Clinic" above)
o at least 1 symptom from the symptom category disturbance of energy production and ion transport (see clinic)
- no need to wait 6 months to make a diagnosis
- The so-called Fukuda criteria used in the past are no longer recommended today, as they do not allow sufficient differentiation between mental illnesses such as depression.

Differential Diagnosis Feedback
- postviral fatigue
o considerable weakness and exhaustibility after viral infections, especially mononucleosis infectiosa
o initially difficult to distinguish from CFS, but postviral fatigue slowly but steadily improves within weeks to months
- Fatigue in the context of tumour diseases and chemotherapy, in the context of other neurological, immunological or rheumatological diseases such as multiple sclerosis, fibromyalgia syndrome and autoimmune diseases.
- heart failure
- Endocrinopathies, e.g. hypothyroidism
- chronic infectious diseases, e.g. AIDS
- mental illnesses such as depression, anxiety disorders and burnout syndrome
o difficult to distinguish at first, especially in mild and moderate diseases with a gradual onset
o Depression patients feel better with physical activation while CFS worsens with activity (PENE)
o Depression patients show typical driving poverty, while CFS patients often tend to overexert themselves and show great self-commitment in coping with the disease.
o Cave: during the course of the disease, CFS patients often develop reactive depression.
- UAW of drugs and substance disorders
- for irritable bowel problems gluten intolerance, fructose intolerance and lactose intolerance.

Therapy Feedback
- symptomatic therapy
o Analgesics (non-steroidal anti-inflammatory drugs, in case of severe pain also pregabalin or gabapentin)
o in sleep disorders melatonin, tryptophan, low-dose doxepin (in pronounced sleep disorders also zopiclon or zolpidem)
o for muscle pain and fatigue Liponic acid and N-acetylcysteine
o in case of concentration disorders methylphenidate or modafinil (both off-label-use)
o Substitution of minerals, trace elements and vitamins according to demand analysis (especially magnesium, vitamin D, B vitamins, iron, phosphate, zinc, selenium)
o flea seed shells for irritable bowel complaints
o Physiotherapy and adapted physical load (if still tolerable)
o Coping and pacing (disease management by dividing the energy reserves, daily structuring, avoidance of disease-supporting factors, especially overloads, infection prophylaxis)
o Ginseng and coenzyme Q10 showed slight symptom improvement in smaller studies
o Antidepressants for reactive depression
o cognitive behavioural therapy in case of strong symptom fixation
- infection control
o Valaciclovir in herpes relapses
o for frequent bacterial respiratory infections Antibiosis after antibiotic test
o Immunoglobulin substitution in case of proven deficiency
- experimental therapies
o a Norwegian therapy study with rituximab showed significant clinical improvement, but a follow-up study was negative
o therapeutic immunoadsorption in proven antibodies against beta-2-adrenergic receptors also produced good results (7 out of 10 patients with clear clinical improvement and 3 patients with prolonged clinical improvement)
o the result of a Norwegian clinical study on the treatment with cyclophosphamide is still pending.

Prognosis Feedback
- Spontaneous remission is rare (remission rate 0-31%)
- partial symptom improvement 8-63% of the patients achieve
- Number of deaths from cancer (especially non-Hodgkin's lymphoma) and heart failure significantly increased in CFS patients
- Life expectancy of CFS patients with cancer shortened by 20 years (47.8 years versus 70 years)
- the death age of CFS patients in heart failure is 25 years lower than the average death age in heart failure (58.7 years versus 83.1 years)
- Most frequent causes of death in CFS patients
o 20,1%: heart failure
o 20,1%: suicide
o 19,4%: cancer
o 11,1%: Complications due to CFS (e.g. infections, drug intolerance, kidney failure, respiratory insufficiency).

Last update of this article: 08.2018

 

There are studies that say this but the conclusions were not generalizable as far as percentages. (Because the recruitment was not representative.)

So it could plausibly indicate what kinds of problems we're having, but cannot indicate the probability of getting them.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/

 

https://www.ncbi.nlm.nih.gov/pubmed/22648858
Cancer. 2012 Dec 1;118(23):5929-36. doi: 10.1002/cncr.27612. Epub 2012 May 30.
Chronic fatigue syndrome and subsequent risk of cancer among elderly US adults.
Chang CM1, Warren JL, Engels EA.
Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, Maryland 20892, USA.

associations between CFS and cancer were examined in a population-based case-control study among the US elderly.... CFS associations with NHL overall and NHL subtypes remained elevated after excluding patients with medical conditions related to CFS or NHL, such as autoimmune conditions....

Chronic immune activation or an infection associated with CFS may play a role in explaining the increased risk of NHL.

https://www.ncbi.nlm.nih.gov/pubmed/1394166
Cancer Res. 1992 Oct 1;52(19 Suppl):5516s-5518s; discussion 5518s-5521s.
Does chronic fatigue syndrome predispose to non-Hodgkin's lymphoma?
Levine PH1, Peterson D, McNamee FL, O'Brien K, Gridley G, Hagerty M, Brady J, Fears T, Atherton M, Hoover R.

Epidemiology and Biostatistics Program, National Cancer Institute, NIH, Bethesda, Maryland 20892.

No statistically significant increase attributable to the chronic fatigue syndrome outbreak was identified at the state level.

ETA: expanded the information copied from the study posted first, which might be the follow-up to the second.

 

This does not look like an article to be pleased about. it seems to be a mish-mash of second hand material put together by someone with no idea about ME.

 

Well I didn't like to say so, so I just posted the article to see what others made of it. But it did remind me of the 4-page letter I got with my diagnosis from the Charite (University hospital Berlin), which seemed to be a similar mish-mash of tips and advice drawn from all the studies they could find without any regard for the quality of such studies. I'd rather doctors admit that they don't know much rather than throw together a load of dodgy tips because it's all they can get their hands on.