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Win the Fight Against ME/CFS by Doing Nothing

by Nancy Blake(more info)

listed in cfs me, originally published in issue 236 - February 2017

We are constantly told that, no matter what is wrong with us, exercise will do us good.

Wrong:  According to the February 2015 IOM report Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness , “exertion of any type, physical, cognitive or emotional, may adversely affect many organ systems”.  

An analysis of this report is also presented by the Solve ME/CFS Initiative.

 

Nancy Blake 236 ME-CFS Cartoon child-Immune Cells

 

Let's Spell That Out

The heart is an organ, the lungs are organs, a specific muscle is an organ, our brain is an organ.  Pneumonia, lung cancer are diseases affecting the lungs.  The heart is subject to specific types of damage and disease.  We can strain or damage a specific muscle.

The heart is part of the cardiovascular system...the whole set of organs, the heart, the arteries, veins and capillaries which are concerned with the circulation of blood.  When the heart is damaged, or arteries are clogged up, the whole system is affected.

The lungs are part of the respiratory system which includes the airways and the diaphragm, the muscle which allows the lungs to expand and contract.  The respiratory system provides oxygen to the blood, which is then carried to every cell in the body by the red blood cells, which also remove waste products, metabolites.

The musculoskeletal system consists of muscles and bones and their attachments, which allow us to move our limbs, directed by another system:

Our cerebrospinal system.. our brain and nerves governing our physical movements, our thoughts, our ability to understand and learn, and our emotional responses.

 

Nancy Blake 236 ME-CFS

 

The immune system...the extremely complex set of organs, cells and biological processes which demand all our energy to fight off and heal disease and damage.  It's power to shut down other activity includes physical pain to stop movement of a damaged body part, , vomiting and diarrhoea, to eject toxins from the stomach and gut, nasal discharge to serve the same purpose in respiratory infections, fever, to raise the body temperature to help destroy invaders, and the overall 'feeling sick' which directs us to minimise movement while the immune system does its work. 

Then there is the system that provides fuel: the digestive system...which begins at our mouths, proceeds through our stomach and intestines, and ends at our anus.  The process of digestion is complex enough; researchers are only beginning to understand that the multitude of bacteria in the gut, the microbiome, constitute what almost amounts to a second immune system, even a second 'brain'.  

Another system which we are only beginning to understand is that of our mitochondria.. the set of cells which are not quite part of 'us' but which inhabit each of our cells and are vital to the production of energy by the cell.  

So now, when we read that we have a 'multisystem' disorder...a disease that can attack several whole organ systems....can we begin to appreciate what that actually means?

People who have severe or very severe ME, incapacitated in every way, suffering symptoms which indicate damage in every bodily system, are living, hour by hour, the experience of what that actually means.

'You Couldn't Make It Up'

But if we go to the doctor with a list of apparently unrelated symptoms (symptoms from several systems), and which vary from day to day and hour to hour (apparently randomly, because we aren't used to linking physical exertion with getting sick, so we don't notice that link)..what is she/he going to say?  

The doctor has been taught that there are specific diseases that have a specific set of symptoms, and that if you come in with lots of different ones, you must be a hypochondriac.

The doctor doesn't notice that while she/he has a number of patients who haunt the surgery with every little thing that they get and are frightened by, you are not one of these patients. The doctor in fact may have trouble remembering anything about you, because up to now, you have been one who never bothers him/her.  

The doctor has been taught that loads of symptoms means 'hypochondriac'.  The doctor has not been taught that if a previously healthy and happy patient has a dramatic change in behaviour within a short space of time, with no other change in life circumstances apart from an apparently minor viral illness, the doctor  cannot make a psychiatric diagnosis. Even people who have had extremely traumatic experiences don't get that sick that quickly.

You have a range of symptoms, which taken one by one, are apparently unrelated.  And they vary, depending on exertion.  The pattern taken altogether is quite specific.  You couldn't make it up, and you haven't.  

What you've got is ME/CFS/SEID, and that is a 'disease' in which 'exertion of any type' 'may adversely affect many organ systems'.

Exercise can cause damage to many systems.  Exercise is toxic.  Exercise will do you harm. Exercise poisons every system in your body.

  • If it was a pill, would you take it? 
  • If it was a food you were severely allergic to, would you practise eating it?  
  • If it was present in many foods, would you try to avoid those foods?
  • If you are avoiding something because you know it poisons you, should you have psychiatric treatment to cure your avoidance?  
  • Should your friends and family be insisting that you take these pills, eat this food?  
  • Should you be keeping on trying it out, judging your success by how much of it you can tolerate?  
  • Do you keep on believing that it must be good for you, even though when you do it, you get sicker?

If there was a medication that caused the harm that exercise causes ME/CFS patients, it would immediately be withdrawn from sale, and prescribing it would become medical malpractice.

But they are still prescribing it, still setting up research to investigate it, still insisting that if you've got ME, you've got to do it.

Just Don't!!

You desperately want to get better, and are prepared to 'do anything' if it will help.

You  have always fought, always risen to the challenge, always overcome obstacles.  Not just for yourself, but for your family, the people you care for.  You are a positive, energetic, active, unselfish giver.  

The last thing you could ever feel comfortable about is 'doing nothing', yet that is the key to success in fighting this illness.  (And how 'strong' do you actually have to be to fight the pressure ... from ourselves, our family, our doctors and society in general.. to get up, keep moving, fight against our body's messages that we must rest...gradually increase activity...you have to have a will of iron to go against all that.)

The clue?  Your immune system is causing that progressive muscle failure, that physical inability to keep going....because it is fighting a powerful, pervasive enemy with infinite ability to conceal itself, infinite ability to regenerate when you start to use your muscles.

You already know that you have to rest before and after any planned event...but do you know how much that rest is helping your immune system?  Do you realize that even more rest will help it more?  That that 'holding still' is the most powerful weapon you have in the fight against ME/CFS?

When you 'hold still'....like a child keeping quiet in a game of hide and seek....your immune system has its chance to seek out the invader, to reduce its powers.  Your part is to keep as still as possible, for as long as possible, while it does its work.  

We really can 'win the fight by doing nothing'.  

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About Nancy Blake

Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.  She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology.  Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon. Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model. She may be contacted via alternatives@alternatives.karoo.co.uk  http://nancyblakealternatives.com/ Her books are available to purchase at www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

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