ME/CFS is not a psychosomatic illness

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When people get diagnosed with CFS, they are most likely told it is a psychosomatic illness. The meaning of  "psychosomatic", found in various dictionaries online, being:

 ...caused or aggravated by a mental factor such as internal conflict or stress...

... of mental or emotional origin...

...of or relating to a disorder having physical symptoms but originating from mental or emotional causes...

 

The patient is basically told, it's his or her own fault and most likely a consequence of hectic stressful life and/or internal emotional problems. When he or she changes her life outlook, thinking, job, beliefs, or even house and partner, everything should get better. Yes?

Not quite...

Medical dictionary  meaning of this word is slightly more complicated and we learn, that even asthma, migraine, and peptic ulcer is "psychosomatic"! Therefore more or less related to our emotions and stress, as are most chronic illnesses... Shouldn't we all be sent to a psychotherapist for a correct diagnosis?!

After a long and somehow uneasy decade of self-managing this condition, I have looked at the NHS website with a hope, that there would be something new on offer in terms of  testing, treatment, guidance or a specific support. I haven't found anything new, but their website pointed to ME Association with the article I copy below in full.

You can also check my small "collection" of information on this subject here and the latest outcomes from the same group of scientist are becoming more and more specific in terms of biomarkers (Nagy-Szakal et al. 2018):

Among the top plasma biomarkers differentiating ME/CFS patients from controls were decreased levels of betaine, complex lipids (lysophosphatidylcholine [LPC], phosphatidylcholine [PC]) and sphingomyelin (SM), and increased levels of triglycerides (TG), α-N-phenylacetyl-glutamine, ε-caprolactam and urobilin (Table S2). Set enrichment analysis of the results of logistic regression models revealed that ME/CFS subjects had reduced levels of PCs and dysregulation of the choline-carnitine pathway (Table 2).

I do hope that the mystery of CFS is on a good way to be resolved by mainstream medical science. In the meantime, functional medicine and nutrition has a lot to offer to support overall health if you want to be pro-active and not just wait for "magical pill".

Check out my system of coaching here or,  if you're already able to walk for at least an hour and wish to get outdoors, send me an email to book a Walk&Talk experience.


---------------- here is the article ------------------

W. Ian Lipkin, Director of the Center for Infection and Immunity and the Center for Solutions for ME/CFS at Columbia University, has written the following letter several days before the Fourth Annual Conference on Psychosomatics at Columbia University this weekend. The original letter can be found at this link.

18 October 2018
Dear Colleagues and Friends,

The Center for Infection and Immunity (CII) has been committed to ME/CFS research since 2010. We began this research with generous support from the Chronic Fatigue Initiative of the Hutchins Family Foundation, the National Institutes of Health, and the Microbe Discovery Project.
In 2017, the CII was selected to host one of three NIH centers funded for collaborative research into the biology of this disease. The Center for Solutions for ME/CFS (CfS for ME/CFS) includes representatives from #MEAction and Solve ME/CFS as well as clinical and basic scientists drawn from leading academic institutions and clinical sites across the United States.

Our studies of blood, cerebrospinal fluid, saliva and feces, using state-of-the-art methods that include microbial gene sequencing, metabolomics, proteomics, and immunological profiling, confirm that patients with ME/CFS have biological abnormalities that cannot be characterized as psychosomatic.

Committees convened by the National Academies of Sciences, the National Institutes of Health, and the Centers for Disease Control and Prevention have also concluded that ME/CFS is not a psychosomatic disorder.

We are committed to actively investigating the causes of immunological and metabolic abnormalities in ME/CFS. Our hope is that this work will enable insights that lead to treatments.
Sincerely,
W. Ian Lipkin, MD
Director, Center for Infection & Immunity
Director, Center or Solutions for ME/CFS

Nutriwellness MagicMix Drink

FLEXIBLE RECIPE



Spice base (all together or to chose from):

CORIANDER ground seed - 1 tsp
TURMERIC - 1/2-1 tsp (can stain the teeth - brush them after each drink!)
CINNAMON – 1/3 tsp
GROUND CLOVES - 1/4 tsp
BLACK PEPPER spice – pinch or two (to enhance absorption of others, especially turmeric)

If you need to warm up and can stand the heat, you can add the following two. I prefer ginger fresh and with lemon. Chili tastes better in a cacao (cocoa) drink..

GINGER POWDER – 1/3 tsp
CHILI - pinch


‘Roasted’ base (chose 0-3 to make 1-2 tsp altogether):

CHICORY – 1 leveled tsp
ACORN COFFEE (ŽALUĎOVKA) – 1 leveled tsp
DANDELION COFFEE
CAROB POWDER
ORDINARY ORGANIC COFFEE (espresso)
CACAO (COCOA POWDER) 


MUSHROOMS and other TONIC HERBS (chose 2-5):

REISHI – 1/3 tsp extract powder (or separately made herbal tea)
CORDYCEPS – 1/3 tsp extract powder (or 1 tsp ordinary powder)
FO-TI root (He Shou Wu) powder - 1/2 tsp
REHMANNIA - 1/3 tsp powder

ASTRAGALUS - 1 leveled tsp powder

SCHISANDRA powdered berry - 1/3 tsp or:
Schisandra tincture 5-10 drops

CHAGA powdered mycelium -1/2 tsp
CHAGA strong black bitter extract – 1/6 tsp (this product can last a whole year..)

SHITAKE extract - 1/4-1/2 tsp
SHITAKE or MAITAKE powder - 1 leveled tsp

ATRACTYLODES POWDER 1 tsp
WHITE ATRACTYLODES extract - 1/2 tsp

CORIOLUS – 1/2 tsp powder or tea made from the whole herb


FATS to make drink creamy:

COCONUT BUTTER / ORDINARY BUTTER - 1 heaped tsp
COCOA BUTTER (BUTTONS) – 2-4 pieces
MILK - organic full-fat (if you tolerate dairy) or nut milks (almonds, hazelnut, pumpkin, coconut...)


EXAMPLE and method:

1) Boil the water
2) To 300-400ml cup add following

CORIANDER ground seed - 1/2-1 tsp
TURMERIC - 1/2-1 tsp
CINNAMON – 1/3 tsp
BLACK PEPPER – pinch
CHICORY coffee – 1/2-1 tsp
REISHI – 1/2 tsp extract
FO-TI ROOT – 1/2-1 tsp
SCHISANDRA - 1/3 tsp powdered berries

3) Pour the boiling water, stir well.
4) Add fats or milks, for extra creaminess mix with capuchino mini-blender.
5) Stir before drinking for maximum benefits as this lifts settled powders.


WHERE TO BUY

Mushrooms and other herbs can have 3 main forms:

1) EXTRACT POWDER - this is an equivalent to instant drinks. There is a very little residue when poured over with hot water and powder has high concentration; therefore can be more expensive per gram, compared to ordinary powdered form - you only need very little of it to make strong drink.

2) POWDER - FINELY GROUND HERB - this is where most ordinary spices belong. Drink made from powders will have some residue on the bottom of the cup and usually need to be left in boiled water for few minutes to extract the goodness of herbs. Some need fat to be dissolved better.

3) WHOLE HERB - need to be made into decoction by boiling up, often for up to an hour, depending on type of herb.

I started to make decoctions from the whole herbs but this method was very time-consuming. When first extracts and powders appeared it was very welcomed but also confusing. It was hard to tell, what was a good quality one and what these powders should cost. I went through over 10 different brands; there are some very good quality powdered extracts available now, but they can be very expensive. If you're a beginner and want to try a variety of herbs, I recommend to start with cheaper and milder powders, such as those from Detox Trading. 

DetoxTrading sells very affordable but good quality and good tasting powders of mushrooms, herbs and berries. I specifically like their Schisandra berry powder, which has bright red colour, unlike other powders or extracts I tried before. I also like their Cordyceps mushroom because it tastes like chocolate! ;) I also learned, this Cordyceps is 100% powder, ideal for people who may be highly allergic to grains and worry about rice or corn dextrose, usually added to extracts as bulking agent.

I cannot tell, if medicinal value of these mushroom powders is as high as that of concentrated extracts, but I do like their taste and as I use these drinks as replacement for ordinary coffee or chocolate, which I'm too sensitive too, I appreciate their affordable price.

If you seek mushrooms for medical reasons, concentrated extracts or combinations would be more suitable, and such I found to be of good quality here, HERE,  here or here.



 

Coriolus can be found in forests across the UK or Europe..

 

ME/CFS - What helped my fatigue

 
For the latest RESOURCES on ME/CFS please look here


This is an updated blog (Dec. 2015, Jan. 2016)  from January 2015.

An article published in October 2014 in Stanford Medicine News Center talks about the research which claims that the brains of patients with chronic fatigue syndrome have white matter abnormalities in the right hemisphere of their brain, comparing to healthy people or people without CFS.

“CFS is one of the greatest scientific and medical challenges of our time,” said the study’s senior author, Jose Montoya, MD, professor of infectious diseases and geographic medicine.

“Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.”

The combination of symptoms can devastate a patient’s life for 10, 20 or even 30 years, said Montoya, who has been following 200 CFS patients for several years in an effort to identify the syndrome’s underlying mechanisms. He hopes to accelerate the development of more-effective treatments than exist now.

Read the full article here and please come back to this blog to learn about the other interesting, newly found specific biomarker for CFS ↓ ↓ ↓ 

There is another new, well referenced article on Medscape (free registration needed to view) called ‘Chronic Fatigue Syndrome: Wrong Name, Real Illness’. In the article, the author Miriam E. Tucker briefly mentions details about CFS/ME definition, problematic process of the diagnoses and the still poor acceptance of CFS as a real illness, meaning with no underlying psychological or psychosomatic problem as primary reason for CFS development.

Open Medicine Institute founder and director Andreas M. Kogelnik, MD, told Medscape Medical News:

"In medicine, we tend to like the one-answer solutions.

We're great at diagnosing things that have one problem, like a clogged artery.

What we're really bad at are complex diseases that have a systemic issue going wrong.

With ME/CFS it's the whole system that's broken down, so there may not be one pill to cure everybody.

It's more a matter of figuring out the imbalance in the system. We're not good at thinking that way in medicine. I think that's something that we need to change, particularly around this disease."

"People do think it's a spectrum of disease. We've settled on that it's an immune-related disorder, and there is potentially a subset that's autoimmune, a subset that's viraly triggered, a chronic viral infection, and perhaps other triggers or stressors... People are still kicking around whether it's autoimmune or chronic low-grade infection."

 
I was diagnosed in 2009 and offered next to no help from the medical profession. I had no other choice than to embrace what was happening to me and face it with tools I had. Not to fight it, as many like to call the process of healing. There was NO energy to fight anything. There was only stillness, peace and falling to the bottom in order to rebound up again. This has repeated several times but with less and less intensity until I was finally able to leave my bedroom...

I wish there was at least the knowledge available, we have today - please refer to my latest resources (in case you read this in far future :) or directly to the article based on  Dr. Robert Naviaux research and elegantly written by Veronique Mead, MD.


Early on in my journey during the "dark ages" I was, however,  intrigued to read a study comparing biological markers of CFS and non-CFS groups after exercise.

CFS group had clearly shown POST-EXERTIONAL FATIGUE (fatigue after exercise). 

This is a very objective marker and may be the only marker easily measured or observed, especially in those patients, who’re already managing other symptoms of CFS - often "the part under initials ME",  mainly involving muscle pain.
 
The common picture of CFS person is healthy on the outside and according to commonly provided blood tests. There is no visible disability, while the truth is, unfortunately, very different on the inside.

Here is a list of markers tested positive in high number of CSF patients, not found to be common in non-CFS people (references included in the original article) :


1. DIFFERENT RESPONSE TO EXERCISE

a) Significantly reduced oxygen consumption in CFS after a treadmill test

b) Altered gene expression following moderate exercise


2. BILATERAL WHITE MATTER ATROPHY IN BRAIN

a) Significant decrease in NK-cell cytotoxic activity & increased level of pro-inflammatory cytokines

b) Significant elevation of non-Hodgkin lymphoma (linked to Epstein-Barr virus) among patients 66 – 99 years old

c) High positivity of CFS patients for enterovirus viral capsid protein 1.




PLEASE NOTE - IMPORTANT

I AM GOING TO SHARE WHAT HELPED IN MY CASE BUT REMEMBER WE ARE ALL SLIGHTLY DIFFERENT AND THERE IS NO SAME PROTOCOL FOR TWO DIFFERENT PEOPLE.
I WILL BE HAPPY TO MAKE YOUR INDIVIDUAL PLAN DURING THE COACHING AND THIS CAN BE COMPLETELY DIFFERENT TO WHAT IS WRITTEN NEXT!!

BACKGROUNG OF MY TYPE ME/CFS:  
direct post-viral onset
chronic stress-induced
including chemical stress (exposure to carpet glue, long term daily to naphtalenes, terphenyls and ACH)
including noise stress @ work
living in several mold-damaged houses
many tick bites over years but negative Borrelia test
amalgam fillings 
sensitive to artificial light (and EMF?) from childhood
suspect and family history of Aspergers

After researching the subject of EMF sensitivity and HSP (hyper-sensitive person syndrome), this could be caused by:

1) heavy metal burden (such as mercury amalgam in teeth & wearing metal spectacles - giving pain around jaws & ears)

2) over-reaction of brain & nervous system to certain combination of outside stressors, i.e EMF + noise + artificial light + air pollution + toxins (palpitations)

3) feeling of overwhelm due to low hormones such as adrenaline (difficulty to sit/stand upright) due to "exhausted" or inflamed adrenals (please see UPDATE ON CDR in ATP)


4) environmental burden on detoxification pathways (fume exhausts, mycotoxins and GMO as the most likely causes) increasing demand on immune system

Obviously, trying to sort out my problem, I’ve done some interesting reading over the past years in the field of nutrition, functional medicine, quantum medicine and traditional medicine such as Chinese. This became the primary focus of my life, my adventure, hobby and my profession. I always knew there was something else going on. Some specialists suspected a virus or bacteria hidden in the deep tissues, some blamed heavy metal burden from the industry or dental work, autoimmune condition destroying our mitochondria or adrenals, causing inflammation in the brain. Many blamed adrenal exhaustion (correctly HPA dysfunction) as a cause of CFS but why this happened in the first place was always a bit of mystery.

On my journey I’ve done numerous experiments with foods, supplements, balneotherapy, altitude therapy and other treatments. Here is the list of things which worked for me and made a VISIBLE STEPS FORWARD in overcoming fatigue and "giving" more energy:

1) Nutrition

Very early on my journey, clearing my diet from junk, sugar, dairy, gluten, synthetic chemicals & adding "tons" of minerals, vitamins and phytonutrients, helped with better focus, clearer thinking, better concentration, all sorts of pains, occupational & sport induced Carpal tunnel, digestive problems & constipation, sleep, hay fever, dealing with stress, bringing more calm, quality of skin & hair.

2) Royal jelly and Seagreens

Fresh royal jelly from my home country and clean sea vegetables from UK company Seagreens were first ‘remedies’ to give me a visible long lasting ‘energy kick’.

3) Raw home-made cheeses, whey soup & bone broth

After many years of being nearly vegetarian and vegan (wrong!?), I introduced dairy foods, trying to find as clean and organic sources as possible. These helped to raise my hormones and feel much more energetic and alive!  I had to watch the amount first, as it happens after a period of eating dairy & meat, there may be increase in symptoms of oestrogen dominance, inflammation, sinus congestion and histamine intolerance (cheese!). Some pains can creep slowly back, with more animal or allergenic foods introduced, so the BALANCE is the answer.

Savoury whey soup (unfortunately only available to make from the fresh, raw milk), brings up feelings of calm even during extremely stressful occasions (such as travel) and also helps, not surprisingly, with digestive issues.  This can be literally instant! I have not found any replacement so far, in form of any supplement for this "fresh savoury" whey liquid, we get in large amounts as a by-product when making  traditional quark in Slovak households. Most of it goes to animals, cats, pigs or even down the drain...!

Bone broth  - the more often I have it, the better I feel, it is also our traditional soup.  Surprise surprise. It was amazing to watch how, during the last decade, this food was "discovered" by health community here in western countries.

4) Limcomin (more rest & less stress)

This is a supplement from hair mineral analysis testing company ARL. It has a very specific combination of chelated minerals and vitamins. In my experience it helps to calm down over-stressed body and therefore give it a much-needed space to recover. My sleep is more peaceful using this supplement and it also seem to keep my immunity in better condition if I take it regularly.  High manganese level in this supplements helps not only with joint pain but also supports the heath of hypothalamus and pituitary glands and the whole HPA axis.

5) Taoist and adaptogenic herbs

The effect of true ADAPTOGENS is mild and increases with their time of use. Unlike herbal stimulants such as various ginsengs, maca, tribulus, chocolate, coffee, guarana, cola, royal jelly etc. it is safe to take adaptogenic herbs long term without side effects.  Be aware of their diuretic action and only take as part of wider plan including correcting electrolytes and mineral deficiencies.

I created Nutriwellness Magic Mix drink, consisting of herbs such as turmeric, reishi, coriander, cinnamon, pepper, chicory, cordyceps or schizandra, taken with a spoon of ghee or butter, which can be adjusted to individual needs and tastes.
 

Some of my 'life saving' remedies: REISHI, CORDYCEPS, Acerola vit. C powder, Himalayan salt, Coconut oil... 


6) Avoiding all forms of stimulants

In the worst stages of HPA dysfunction or "adrenal exhaustion", any small amount of dark chocolate, coffee, tea, alcohol or even ginseng, rhodiola and B-vitamins, would cause me a big set back. The following day after ingestion I would crash to the depths of exhaustion nightmare. I became so exhausted I had to make myself to breathe consciously. I am not kidding. My body was not able to breathe without me concentrating on it. My breath would be very shallow and even stopped for 10-15 seconds at times.


7) Progesterone cream

This was one of my promising experiments in the never-ending search for normal life and daily energy.  I made mistake to use dosage written on the box by manufacturer. It took me one year to realise MY PERSONAL DOSAGE was only 1/12 of the recommended amount. If you have CFS or "adrenal exhaustion", watch the dosage on all supplements, especially stimulating ones, never use dosages recommended for otherwise healthy people.

8) Dehumidifier / air purifier  

After learning about chronic mold exposure (also called CIRS) and its ability to switch on CDR response in 2017, I decided to invest in various dehumidifiers/purifiers. I realised that all the houses and flats I have ever lived since 1998, were seriously water damaged, with remaining sources of black mold. The air purification would not directly made too much difference in my energy levels, but helped to solve returning sinus problems. It helps me to breathe better and have better sleep, shortening the needed average sleep time from 11 hours to 10.


I will finish this blog with the words of Dr. Komaroff, professor of medicine at Harvard Medical School and senior physician at Brigham and Women's Hospital, Boston, who has been studying the condition since the 1980s.

"I think the most important thing for physicians to know is that while we don't have a diagnostic test or a proven treatment, there is now abundant evidence that in these patients there is an underlying biological process. Their symptoms are linked to problems of their biology and not imagined."

Dr. R Naviaux research in V. Mead article (2018)

Linkto CFS resources from Stanford School of Medicine.

Other helpful resources:

Dr. Sarah Myhill

Dr. Michael Lam

Taoist Health & Fitness

How much caffeine is in your diet?

spreadshirt.com

When we have imbalanced blood sugar levels, we often wake up in the morning with not enough energy to start the day. Another drop is often experienced between 2-4 pm. To get moving, both in the morning and afternoon, we start to reach for a cup of coffee and addiction occurs.

Caffeine, and similarly smoking and sugar, makes us feel good, because it raises blood sugar levels.

Constant rising and dropping of blood sugar and using stimulants to overcome tiredness can be very dangerous for some of us. It may take several years to show but slow depletion of adrenal reserves can lead to abnormal fatigue, often this happens after we experience some stressful event.

Adrenal glands produce hormones such as adrenaline and cortisol, which are helping us to get on with everyday life and stress. Stress can be anything like cold weather, hot room, too much toxins, noise, or emotional stress.

Overusing stimulants such as coffee, chocolate, Coke or smoking can cause exhaustion of adrenal glands and this can lead to

• depression, anxiety, chronic fatigue and impaired stress hormone production 
• headaches, migraines, dizziness, insomnia, irritability, nervousness 
• poor mental performance

Each of us has own limit, which for some could be just 1 strong cup of tea a day. If you have sleep problems, even this could be too much. Tea (black, decaf and green) and chocolate also contains theobromine, another potent stimulant.

1 cup of ground coffee	115mg
1 large bar of dark chocolate (125g/4oz)	80mg
1 cup of instant coffee	65mg
2 painkiller tablets	60mg
1 cup of tea	50mg
1 can of cola	40mg
1 large bar of milk chocolate (125g/4oz)	20mg
1 cup of drinking chocolate	3mg
1 cup of decaf coffee	3mg

Source of table 1: M Glenville "Natural Solutions to Infertility"

COFFEE
Brewed (8oz/240ml)	95-200mg
Instant (8oz/240ml)	27-173mg
Espresso (1oz/30ml)	40-75mg
Decaf Espresso (1oz/30ml)	0-15mg
Decaf (8oz/240ml)	0-15mg
TEA
Black (8oz/240ml)	14-61mg
Green (8oz/240ml)	24-40mg
Black decaf (8oz/240ml)	0-12mg
SOFT DRINKS
Diet Coke(355ml)	38-47mg
Pepsi (355ml)	32-39mg
Diet Pepsi(355ml)	27-37mg
Coca Cola(355ml)	30-35mg
Dr Pepper(355ml)	36mg

Source of table 2: http://www.mayoclinic.com/health/caffeine/AN01211

CHOCOLATE
Dark  70-85% (100g)	80mg
Milk (100g)	20mg
Cocoa powder (1 TBSP)	12mg

Source of table 2: USDA database

WHAT ARE ALTERNATIVES?

Tea 

- most herbals

- Roiboos (red bush)

- use one bag of ordinary (black or green) tea per litre of water, not per cup

Coffee 

- Caro and other chicory and grain based

- powdered mushrooms (Chaga with Reishi tastes great)

Drinks 

- molases cola (mix with lemon, stevia to sweeten and mineral sparkling water),

- filtered tap water with lemon

- pure mineral water

Chocolate
- Carob powder
- mushroom powders (1/4tsp of strong Chaga + 1 tsp of Reishi per cup tastes like Moca)