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ME/CFS Advice for 2019

by Nancy Blake(more info)

listed in cfs me, originally published in issue 252 - February 2019

Dedication: To my friend whose increasing help as the years advance has for thirty-two
years kept severe ME at bay, and without whom this could not possibly have been written.

 

I apologise in advance to both those who already know and practise much of this, and to those who will find it much too complicated and long-winded.  ME/CFS is a big and complicated elephant, we can know parts, and not know that we don’t know other parts.

I have to count myself in on this:  I had had ME for thirty years and still had no idea that the severe forms of ME involve intense, intractable pain which can go on for decades, along with seizures and intermittent paralyses.  I didn’t know that ‘light and sound hypersensitivity’ can mean intensification of already unbearable agony.[1]

Note:  ME can attack in the severest form right from the beginning, beyond any meaning of rest, and maintain relentless progress into even more acute and extreme suffering.  To those patients, my advice will seem at best irrelevant, at worst, positively insulting. My hope is that the patient whose illness onset is less ferocious will find it helps prevent decline into severity.

In fact I used to say that ME/CFS was like being in a prison with elastic walls..but at least it wasn’t painful.  I wondered whether the emphasis I placed in my articles and books on the dangers of exercise might be exaggerated.  It was not.  My knowledge had been incomplete:  the advice I had given was correct.

Whitney Dafoe Before and After ME

Above: Backpacker/photographer Whitney Dafoe, with ME but still travelling.
Below: Now with very severe ME, still courageous:   “I have always been inspired and dedicated
and never thought I'd 
wind up where I am now. So I kept going, kept pushing myself
to do everything I wanted to do.” 
Photos: Courtesy of the Open Medicine Foundation

 

In fact, I believe the reason I had not encountered the pain of severe ME/CFS was precisely because I had taken the advice which I am now giving to you.

ME/CFS is a complex, disabling, chronic disorder.  It is not psychogenic, and is defined by the fact that

“exertion of any type – physical, cognitive or emotional – can adversely
affect many organ systems.....” [2]

This illness causes damage in a range of organ systems; exertion facilitates that damage.

Complete rest was the original prescription recommended by the doctors who cared for patients, notably Melvin Ramsay, during the 1955 Royal Free Hospital epidemic.[3- 4] The ME/CFS skeptic, David Aronovitz notes that in the 1932 Los Angeles hospital epidemic  “Although the majority of LAC cases fully recovered, a subset suffered from prolonged and recurrent symptoms.”[5] This was at a time when being in hospital meant being in bed.  Now, when the NICE Guidelines warn against ‘too much’ rest and prescribe exercise, ME/CFS is often considered to be a progressive illness from which almost no one recovers.

ME/CFS forces us to give up two beliefs which are deeply embedded in our culture:

  1.      That ‘fighting’ our illness will help us get better.
  2.      That going to the doctor will help us get better.

The Importance of Not Fighting

Whatever the complex factors are that cause ME/CFS, we do not yet have an effective medical treatment for it.  This means that any healing has to be done by our body’s innate healing mechanisms, the main one being our immune system.

The immune system needs enormous amounts of energy.  When we are sick or injured, internal bodily signals tell us to find a safe place to curl up and do nothing until we feel better (‘sickness behaviour’).  This complete inactivity keeps all our energy available for our immune system to do its work.

Many illnesses have a predictable course.  When there is ‘something going around’, your friends can tell you what their symptoms were and how long it lasted.  With ME/CFS, the immune system seems to need a very long period to do its work. The one or two people who do report full recovery these days will tell you that their doctor told them to go home and rest for six months.

Six months is an unheard of length of time to take off work and rest.  But this must be set against the decades of disability and pain which ME/CFs sufferers risk by trying to remain active.

Take your illness very seriously indeed.  Do all you can to get the rest that you need from the beginning in order to create the possibility of improvement or recovery.  It is your immune system, not you, which has to do the fighting.

The Importance of Not Going to the Doctor

The second belief that must be challenged is that your doctor can give you a correct diagnosis and effective treatment.  If what you have is ME/CFS, this is not the case, and not going to the doctor can be your best plan.

This isn’t your doctor’s fault. The fact is that the advice given to doctors about ME/CFS means that they cannot do thorough diagnostic tests, they cannot offer you the treatment that would help the most (rest), and the treatments they are told by NICE are ‘safe and effective’ (CBT and GET) can make you irreversibly worse.  These guidelines [6] are currently being reviewed, but it is likely that they will not be significantly changed.[7]

This means that you need to be very systematic indeed in your relations with your doctor in order to keep his/her good will while avoiding the dangers of inappropriate and harmful treatment.

My brief article from Positive Health - A Radical Care Pathway for ME/CFS   Positive Health Issue 212,[8]  which you are free to download and print, may help in discussions with your doctor, as well as others who may not understand your situation. If you are reading this, you may already know, or suspect that you have ME.

If you have a set of symptoms that involve muscle failure after minimal activity, cognitive problems (difficulties with understanding, short term memory, simple problem solving), endocrine problems (temperature regulation, sleep rhythms, appetite), and indications of immune activation (ongoing sore throat, low fever, sensitive lymph glands, and these symptoms are all made worse by exertion (which can be both delayed and protracted), this very complicated combination probably indicates ME.  (And for sceptics who think you are making them up...it’s very unlikely that anyone could come up with anything this complicated by chance!)

Your doctor cannot offer you anything useful for ME/CFS other than symptom relief, which in ME/CFS may actually be ineffective or harmful.  What you do need is for your doctor to test for other treatable conditions which have somewhat similar symptoms:  an underactive thyroid, or anaemia are two obvious examples.

It is a sad fact that when you present with a large number of symptoms, your doctor will have an attitude, reinforced by what she/he is told should be their response.   If you are a woman, this attitude is very likely to be dismissive, reassuring rather than objective, and may even be one of contempt.[9]

It is perfectly natural for anyone who relatively suddenly finds him- or herself strangely incapacitated, with a range of symptoms which seem inexplicable and don’t get better, to get very worried, and to seek, persistently, for a diagnosis and effective treatment.   This leads many, if not most people who are unfamiliar with ME/CFS to return to their doctor again and again insisting on diagnosis and help, and to seek out other doctors when they find their own doctor can’t help.

Every visit to a doctor depletes the energy available to the immune system.  Every visit to a doctor involves the exertion which makes the illness worse.

The deteriorating patient becomes more desperate; the damage caused by further pursuit of medical help causes more deterioration in a vicious circle that too often means that by the time the patient realises the truth of his situation, irrevocable harm has already been done.

If their quest has taken them down the route of Graded Exercise Therapy, it may have led them into severe and irreversible ME.

And while this has been going on, the patient will have been labelled a ‘heartsink’ patient...the one the doctor hates to see coming in the door.  Frequent visits to the doctor invite the spurious label ‘medically unexplained symptoms’, for which CBT and GET will be offered.[10]  Or other psychiatric labels may be applied:  depression, hysteria, somatoform disorder, bodily distress disorder, functional neurological disorder, all of which lead down the same dangerous path.

Not-going-to-the-doctor as a prescription sounds laughable, and irresponsible.  It is not.

But you do need to have good relations with a doctor...you need those exclusionary tests, you will need support with disability applications, you will need for your doctor to see beyond ME/CFS when you fall ill with other, treatable conditions.

Managing your Relationship with your Doctor

You must challenge the role which your doctor expects; clearly make the case that you are not going to become the endlessly returning, frustrating patient he so dislikes.

Prepare a clear account of your symptoms, including when they started, how long they last, how intense they are, how often they occur.

(If you are a woman, your doctor will find it harder to dismiss you or brush  your information aside if you have a male companion.)

Take charge of the consultation immediately, with a comment like ‘I know how much pressure doctors are under these days.  I want to take up as little of your time as possible.’

Explain that your list of symptoms is there to save him time, and make it easier to diagnose your illness accurately.

Tell him you suspect that you may have ME, but that ‘you know he will want  to make sure nothing else is overlooked.’  (You are not asking for complicated diagnostic tests, you are telling him that you know he is conscientious!)

Tell him that you know that there are no definite diagnostic tests for ME/CFS, and you know that there is not, as yet, an effective medical treatment.  Because of this, you do not want to take up his time with many visits about your ME.  

Rather than asking for the six months rest that you need but he may not feel able to offer, you could mention that the recently published NHS Long Term Plan suggests ‘supported self-management’ as a way forward for people with a chronic illness.  

Hopefully this suggestion will be more attractive to your GP than making a (potentially expensive) referral to a specialist ME/CFS clinic.  As these are largely run on the biopsychosocial model, and offer CBT and GET, they are very much to be avoided.  

NICE says you can refuse a treatment without prejudice, but medical insurers/the DWP may want to refuse disability payments unless you have cooperated with recommended treatments.  The Guideline C53 still gives ‘increasing activity’ as the goal and recommends CBT and GET.  If your GP is insistent, you could point out the FITNET Trial[11] which offered these therapies remotely, and suggest that this could be incorporated into ‘supported self management’, which would allow you to increase activity at your own pace.  

You do need to seek specialist advice about dealing with any claim for disability especially now that universal credit is coming.  The ME Association should be able to help.

By framing yourself as aware of the pressures on your doctor, and doing all you can not to increase them, hopefully you have created a relationship in which your doctor will be willing to give you what help and support he can when you need it.

 

Author giving Piano Lesson

Listening to My Granddaughter: Keeping My Head Supported on High-Backed Chair
Photo: Ethan Walsh

 

Managing other Relationships

First, with Yourself!

This sounds strange.  But you are part of this culture.  You have deep-rooted beliefs – that being lazy is immoral, that illnesses, like other hardships, must be actively fought, that obstacles can be overcome by just gritting your teeth and pushing harder, that exercise is vital to good health, that ‘giving up’ is a sign of weakness and lack of character.  You believe that suffering individuals should keep a brave face, do all they can to hide their illness.  Other people must not be embarrassed by being confronted by disability.  Being sick doesn’t give you the right to be demanding of others, it doesn’t even give you the right to refuse to meet the demands of others...you must carry on.

Every one of these beliefs is admirable...and every one of these beliefs can cause you to make yourself worse if you have ME.

If you could have a personality transplant and become ruthlessly selfish, demanding and lazy, your chances of recovery would be very much improved!  ME is an illness that rewards the sociopath and punishes the virtuous.

How on earth are you supposed to deal with that?

First of all, keep it simple.  Exertion, especially muscular exertion, acts like a poison, in this disease.  If you had a life-threatening allergy to a food or chemical, no one would question the need for you to be protected from it.  The fact is that intense or protracted exertion can cause a person who has ME/CFS years of incapacity and pain, and ANY exertion delays or prevents recovery.  This is a fact that is not easy to accept, and often is not accepted until irremediable damage has already been done.  If you are to have a real chance at improvement or even recovery, you and those around you need to accept it and act on it right now, before this happens.

Once you have that simple information...that you need to avoid exertion, especially muscular exertion, then you can develop strategies for your own behaviour, and strategies for others concerned for you which will benefit your health. 

It is not about being lazy, or a bad person...it is just that you have an illness which requires you to use your muscles as little as possible.  You do not have to prove anything, excuse anything or justify anything. 

If you are like most people with ME/CFS, you have always been a doer, a helper, a contributor.  You have been energetic, athletic, rising to challenges and to hardship, ignoring minor illnesses and injuries.  Many of you are athletes, back-packers, marathoners.  Others are involved in the very labour-intensive care of young children; elderly or disabled family members. Minimizing exertion can feel like losing your identity...almost more painful than the illness itself.

Changing your behaviour in this excruciating way (I was once described as ‘a caricature of a lazy person’) feels impossible, unbearable.

So let me ask you to imagine that someone you love and care about has this disease.  That person is suffering, feeling terribly ill, but also demeaned by her helplessness..fighting hard to keep going, keep acting normal, keep others from knowing how sick she is.  You are watching your beloved friend getting sicker and sicker...what would you do?  I’m pretty sure you would do anything at all that you thought could help her get better.

That beloved friend is YOU.

Begin to take care of her.

How would you feel if she refused to ask for help, or even admit that she needed it?  How would you feel if she just wouldn’t let you take care of her? Leaving you to watch helplessly as her health deteriorates?

And how would you feel if she did let you know what she needed, let you know exactly how to help her, what to do, and you could see that your care was making a difference, see the possibility of her getting better instead of getting relentlessly worse?  How happy would that make you?

You need to allow those around you to have that happiness.

The way you can do that is to be simple and clear about what you need
and how they can help.

Every bit of exertion they save you is a bit of energy for your body to use toward healing.  Physical help actually is treatment for the disease, much more than just a bit of physical help.  The more those around you care about you, the more satisfaction they can get from the fact that their help is a material factor in the possibility of your beginning to improve.

And Another Thing

You  don’t have to become a sociopath!

You can keep on being the caring, loving, giving, helping person you still are.
You just can’t do it physically.

You’re lying on your recliner at home, chatting to your friend..  Or you are out with her having coffee. Maybe you are at her place, lying on her settee.  Or in a cafe, where you have quietly but firmly insisted on the high-backed chair, or booth that you need to relax the weight of your head.  (See notes below!)

Having got what you need – being able to physically relax -  you don’t need to spend much time talking about your illness.

You focus the conversation on your friend – her activities, her challenges, her achievements.  Your gift is your interest, concern and enthusiasm for what is going on in her life. 

A life lived without witnesses who care about us is very empty indeed.  As sick as we are, we can still be that valuable friend, offering the loving concern that everyone needs. 

If our friends are genuinely interested in our illness we can offer information, and if they want to help, that’s fine, too – but centre stage should be reserved for them and their lives.

OF course, some of the people around you will be locked into what our culture believes...they will insist that all you need to do is try a bit harder, get a bit more exercise.  (ME/CFS patients taken into psychiatric units or hospitals  under the theory that ME/CFS is a psychiatric condition find themselves forced into activity; even, when bedridden,  refused help to get to the toilet, or have their food left out of reach on the assumption that that will make them stop pretending to be ill.}    

You may also be surrounded by people who are just simply used to being taken care of and resent it when you become unable to do that.  This disease can break up families, break up relationships.  Whatever others believe, being treated selfishly and cruelly will not make you get better.  ME/CFS doesn’t respond to injustice and abuse...it continues to follow its own simple rules.

You do not need to expend any energy trying to persuade or please these people.  You also do not need to pretend to be OK to make them happy.  Continue to behave in the ways you need to for your health.  Do what you can to educate them, but it they persist in making your life difficult or unpleasant, you may find you have to get them out of your life.  It is you, not them who will suffer if you give in to them.

Instead of wasting energy on them, make a point of expressing your gratitude to those who will understand and help.  It does take effort for them (as well as for you!) to get free from the powerful cultural beliefs that work against people with ME/CFS.

 When they ask what they can do to help, it’s simple.  The laundry.  Or the shopping.  Or the gardening.  Or taking you out in your wheelchair and having a good time.

A Mantra: Be loyal to yourself and to all ME/CFS
sufferers by explaining what your problem is
.

“I’ve got ME, and that means I can do things, but only for a short time before my muscles stop working and I have to sit down.”

These few words are a simple and courteous way to share vital information about the nature of this complex disease.  (Our problem is not ‘being tired’, or ‘fatigue’.  It is muscle failure. Everyone gets tired: very few people’s muscles actually stop working when they’ve walked a few yards.)

When we insist that we have to sit down, when we just can’t manage the task we thought we could, with friends or with strangers...these words are all the explanation that should be needed.

 

Nancy Blake My Bed is My Office

Me At Work, My Bed Is My Office. Photo: Maia Rose Blake

And Now:  Practical Lifestyle Suggestions

These suggestions are especially useful for newly diagnosed, but have relevance for more long term, mildly or moderately sick patients, in the hope they may set a direction toward improvement or at least help to arrest decline into severe or very severe ME. Patients who have severe or very severe ME require a comprehensive and sophisticated level of care which goes far beyond these suggestions.[12]

In addition to as complete rest as possible for the first weeks or months, you need to incorporate conservation of exertion into every aspect of your life. 

It isn’t easy to make suggestions that will apply to everyone, because what you need will depend on the nature and severity of your illness, on the layout of your house, and on the availability of help.  The problems of someone who lives alone are different from those of someone who has domestic responsibilities for others, and a person who lives in a family will benefit if family members are supportive, and be harmed if they are not.

First figure out how to reduce exertion in basic physical care.  Invest in a bath board or a shower seat.  An electric toothbrush.  Simplify your hair style to make it easy to care for. 

‘A place for everything and everything in its place’, preferably within reach, minimizes effort looking for things.

You need to be as physically near to a bathroom as possible.

If you live on more than one floor, you will need to have access to a toilet on both floors.  It will be an advantage if you live in a relatively small house where distances between rooms are not great.  On the other hand, if your house has larger rooms, you will have more space for the garden recliner which I regard as an essential therapeutic tool.

Keep your head supported.  Our heads weigh about ten pounds (about the weight of a ten-pin bowling ball).  The neck and shoulder muscles which support it are working all the time, mostly outside our awareness.  If we had to carry a ten-pound weight around all the time, the benefits of just putting it down would be obvious.  You will find that keeping your head supported will be just as beneficial. 

The importance of this cannot be exaggerated.  Cognitive problems, difficulty in remembering, understanding, following a meeting at work or the plot of a TV programme – or the name of a friend – are helped by physical rest.  Having your head supported can make all the difference.

Often people with ME are completely wiped out by even simple social events.  When visiting friends, lie down, or keep your head supported with cushions.  In a cafe, a high-backed chair or booth; even backing a chair against a wall so you can rest your head back can help you enjoy the time, follow the conversation, and not have a crash the next day.

With supportive friends and family, all of this can become an automatic part of ensuring that you get the rest you need in order to socialise without paying a price the next day..  Be brave enough to insist that you can only come out socially if these needs are respected.

 

Having the Right Furniture

Foreground: Footstool.  Background:  High-Backed Chair. 
Photo:  Maia Rose Blake

 

Just having the Right Furniture!

  • If you have reclining chairs or a reclining settee, be sure to use them.  If not, I strongly suggest investing in one of those light-weight garden recliners which have a high back and also support for your legs.  The slant can be adjusted with a slight hand motion, and this gives you options from sitting upright to watch TV or use a laptop, relaxing back into a more restful position when chatting with a visitor or on your phone, and lying down completely when you need to take a serious rest or nap. 
    Even if you are quite sick, this enables you to remain in the social spaces of your house, to be among household activities, but still able to slip into a completely restful position whenever and how often you need to, without having to go upstairs to bed, or even get up and walk over to a settee.  Moments, minutes, or hours of complete rest can be instantly and effortlessly interspersed among your other activities. It enables us to simulate normality without making strenuous efforts to do so.
    There is nothing at all a doctor can give you that is more effective treatment than a garden recliner! 
  • If you travel by air, arrange wheelchair assistance...this can make the difference between being able to visit distant family or not being able to.
  • If you have domestic responsibilities (and many people who get ME have a labour-intensive life-style dictated by the needs of small children, or elderly or disabled family members) getting the rest you need is practically impossible.  (According to a US women’s magazine, women with young children work 80 hours a week and get as much exercise as a coal miner.  To suggest, as the proponents of Graded Exercise Therapy do, that a woman in this situation, with an illness that is made worse by exertion will be helped by a programme of exercise is as ridiculous as it sounds.)
  • You must absolutely avoid lifting or carrying heavy things (bags of shopping, wet laundry, children). 
  • You must also avoid exertion-intensive tasks such as scrubbing, polishing, peeling vegetables, ironing, vacuuming.
  • Potatoes are better with the skins on; if other peeling is unavoidable, buy an appliance that will do it for you.  A slow-cooker should simplify getting meals, and large batches of anything can be frozen for another time.  There are wonderful microwaveable things available now – vegetables, sprouted seeds, rice, quinoa...microwave meals do not have to mean unhealthy eating.
  • Get lightweight plates and bowls...plastic is getting a bad press, but you need to have things which are as light as possible...cast-iron ware is right out. 
  • Have a chair in the kitchen so that you can sit for as many tasks as possible.  If you can’t avoid ironing completely, do it sitting down.
  • Rather than carrying the electric kettle to the sink, carry water to the kettle, in a light plastic jug.
  • Get an electric tin-opener
  • Break tasks up, with intervals for rest as soon as you feel the need.
  • When it comes to moving heavy objects, you can learn to use your weight rather than your muscles.  Don’t struggle with the heavy door, use your backside to push it open.  Kick the laundry-basket across the floor, don’t carry it.  Drop it over the stair-rail, don’t carry it down the stairs

You will be able to think of more ways to conserve exertion to suit your own situation.

Avoid the temptation to economize on labour-saving devices.  If it were medicine, you would be glad to pay for it.  These things are medicine.

 

WheelChair Gardening

WheelChair Gardening. Photo: Maia Rose Blake

The Dreaded Wheelchair:  It’s a Tool, not a Life Sentence!

It takes courage to get a wheelchair and use it when you are not actually paralysed or have a broken limb.  The whole culture and your own self-respect tells you to keep going as long as you can. 

In ME/CFS, this is a sure path to serious, long-term disability.  A wheelchair is a tool, you decide how to use it.   An important function of a wheelchair is as a signal that you have a mobility problem, that you may need help.  Wheelchairs make art galleries, airports, garden centres and large shops accessible to you...you can sit down when you need to, and support yourself on it when walking around.  And put your shopping in it!

If you drive, providing a lift for a non-driving friend in exchange for help in the shop is a useful form of reciprocation.  If you no longer drive, but have a Blue Badge, reciprocation can take the form of helping your friend to a very convenient parking place!

But what if People won’t Help?

Asking this question leads us to the question of why ME/CFS attracts so much hostility.  (A recent Facebook post quoted an anonymous doctor who was terrified her colleagues would find out she had ME.  ‘Doctors have even more contempt for patients with ME than for patients with depression’.  That’s a bit of a revelation.) 

 A quick answer is that our economy is very hostile to anyone who isn’t ‘a worker’  (we are all either ‘workers’ or ‘shirkers’) and that our culture, despite all our progress, still demeans women.  Both these affect attitudes towards ME/CFS medically, politically, in the media, and in public opinion.

Contempt in society and in medical practice for people with ME/CFS is a subject for another article.  From ‘mass hysteria’ to ‘bodily distress syndrome’..we are all believed to be either imagining or exaggerating and if we’d only stop being silly and get exercising......

Respect yourself, respect your real needs, keep on resting!  And find your people, on Facebook, Twitter...there is so much information, and so much support out there!

Supplements and alternative therapies:

6G of fish oil, 4g of genuine EPO, pentoxyfilline, B12 as hydroxocobalamin are each supplements that can improve blood flow, according to Les Simpson. [13] Recent research supports his model, based on shape changes in the red blood cell population. [14].

I take the 6g of fish oil, also CQ10 for muscle function, turmeric for inflammation, probiotics for gut flora balance, garlic, zinc for immune support, pyrroloquinoline quinine, n-acetl-cysteine because recommended. 

I have also been helped recently by acupuncture based on the work of Dr. Daniel Keown. [15]

But different things help different people.  Look for the advice of qualified practitioners and experienced patients.  Cautiously. (If it’s expensive and promises a cure, avoid like the plague!)  Trust what your body tells you, about anything you try.

And a final word about the much-criticised social media:  for people confined to their house or their bed, Facebook and Twitter offer access to friends who will understand you better than anyone nearby.  One feature of ME/CFS is very erratic sleeping patterns...at 4 in the morning, passing the wakeful time on Facebook, you can see that even at that time, a frighteningly desperate post will get immediate supportive replies...in their tens.  With sound advice and offers of help and support.  We never have to be alone.

Further Reading

If you want to follow recent developments in medical research into ME/CFS, Cort Johnson keeps us up to date with comprehensible explanations of research publications, with links to the original articles in   www.healthrising.org

For help and advice concerning children and young people, the Tymes Trust is the most reliable source.   www.tymestrust.org

For advice and help with benefits applications and other information about ME,  including research developments, the ME Association can help.   www.meassociation.org.uk

For developments in medical politics/advocacy, David Tuller, Senior Fellow in Public Health in Journalism from Berkeley is fighting our cause, and his blog is careful, thorough, and persistent in tackling the bad science and ethical failures behind the biopsychosocial model and its influential adherents   www.virology.ws/mecfs/ :

Invest in ME have an annual  conference in London which brings together scientists from all over the world for two days of discussion and reporting on their research into ME/CFS.  Because the Science Media Centre never mention it, it is never reported  in the UK mainstream media.  www.investinme.org

References

  1. https://emerge.org.au/mecfs/severity/severe-mecfs/
  2. Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Institute of Medicine, Washington, D.C.; The National Academies Press, 2015.  ISBN-13:978-0-309-31689-7    Chapter 7, Recommendations p 1, 18. 2015.www.ncbi.nlm.nih.gov/books/NBK284910/
  3. Ramsay, A.M. Myalgic Encephalomyelitis and Postviral Fatigue States, the Saga of Royal Free Disease.  Second. S.l.: The ME Association, 1988, Reprinted 2005.
  4. Ramsay, A.M.  A Baffling Disease With A Tragic Aftermath, National Association for ME, 1986, http://www.name-us.org/Definitions Pages/DefRamsay.htm 1986.
  5. Aronowitz, R A, MD, Making Sense of Illness, Science, Society and Disease, Cambridge University Press  ISBN 0-521-55825-5  Chapter 1, From Myalgic Encephalomyelitis to Yuppie Flu, p 15. 1998.
  6. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management  Clinical guideline [CG53] NICE Guidance, published date: August 2007.www.nice.org.uk/guidance/cg53 August 2007.
  7. Blake, N, What can we expect from the current review of NICE Guideline CG53, ME/CFS, Positive Health, Issue 248, August 2018. http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53
  8. Blake, N, A Radical Care Pathway for ME/CFS, Positive Health, Issue 212, February 2014. http://www.positivehealth.com/article/cfs-me/a-radical-care-pathway-for-me-cfs
  9. Dusenbury, Maya, Doing Harm, The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, Harper Collins, 3/6/2018
  10. Blake, N Medically Unexplained Symptoms: Diverting 5-Year Funding from Mental Health, Positive Health Issue 240, August 3017.www.positivehealth.com/article/cfsme/medically-unexplained-symptons-diverting-5-year-funding-from-mental-health
  11. FITNET-NHS Study.  Part of Professor Esther Crawley’s relentless persecution of children with ME/CFS with damaging treatments, but could be used to justify ‘programme at home’ approach when discussing with your doctor.www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronicfatigue/fitnet-nhs/       
  12. http://www.severeme.info/about-the-book.html
  13. Simpson, LO and Blake, N, Ramsay’s Disease - ME, and the Unfortunate Creation of CFS, Lifelight Publishing, 2013, ISBN 0-9571817-2-8.
  14. https://www.healthrising.org/blog/2018/12/04/capillaries-microcirculation-chronic-fatigue-syndrome-me-cfs/
  15. Keown, D, MB,ChB, Lic Ac,  The Spark in the Machine, Singing Dragon London-Philadelphia 2014,  ISBN 978-1-82819-196=9.
Acknowledgements
All photos of author:  Hair stylist -  Liz at Mark Hill

Comments:

  1. Julie Mason said..

    Thank you for the immense clarity with which you have shared your knowledge and experience.


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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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