Add as bookmark

A Beginner’s Guide to ME/CFS Part II: Myalgic Encephalomyelitis, by So Many Names

by Nancy Blake(more info)

listed in cfs me, originally published in issue 204 - March 2013

Continued from Issue 199

www.positivehealth.com/article/cfs-me/a-beginner-s-guide-to-me-cfs-myalgic-encephalomyelitis-by-so-many-names-part-i

Cognitive Behaviour Therapy/Graded Exercise Therapy

It will be evident from all of the above that extra exercise for people who have ME will do nothing except to add to their levels of illness and disability. For a very full description of what happens as a result of an exercise test, and the medical results, go to the blog by Jennie Spotila on Exercise Testing and Results, which can be found on the Occupy CFS website at www.occupycfs.com .[7] In sum, the outcome was that she reached her anaerobic threshold on the first exercise test at a point which would be the equivalent of slow cycling, or folding up laundry. On the second day, she was at her anaerobic threshold before she started the test; at that point, even just lying down watching TV would have her at her anaerobic threshold. So, as we who have ME know too well, just getting through the normal activities of daily living means we are functioning above our anaerobic threshold a lot of the time, which is why we continue to be ill, and become very ill if we exceed this limit by much more. The fact that she pushed through that threshold and continued the exercise test on both days resulted in the worst crash she had ever had, and from which she was still suffering three weeks later.

beginners-guide-to-me-cover

She goes on to describe her level of desperation during the following weeks when she began using a heart monitor which warned her when she her heart rate was going above 95 beats per minute, at which point she was required to stop doing what she was doing and rest until it went down. When she limited her activities to this extent, she did become less ill - her pain, exhaustion and ‘brain fog’ decreased. They decreased enough so that she became very aware of and very frustrated by the limits to her activity. She felt physically better - and utterly miserable at the limited life required to maintain this improvement. 

This will be very familiar to most of us. It is the reason why, as soon as we feel better, the temptation to do some (or all!) of the list of things that need to be done, which has been accumulating while we rest, often overcomes us, and the consequent burst of activity takes us back to illness again.

If Cognitive Behaviour Therapy could teach us ways to feel more at peace with our limited life-style, ways to persist within the limits that will permit an upward curve of improvement, ways to resist the temptation to overdo it the minute we feel a bit better, it could provide a significant contribution to the possibility of improving our health. If Graded Exercise became monitored limitation of exertion to keep us below our anaerobic limit, that could actually be a major factor in facilitating our ultimate progress towards recovery. .

Cognitive Behaviour Therapy based on the idea that we are only imagining that we have a physical illness, and Graded Exercise Therapy based on the idea that exercise won’t make us worse, and that exercise will help us improve in the ways that a person with a normal metabolism would improve are both founded on ‘false illness beliefs’. These practices are very likely to take away any possibility of our approaching recovery, and put us at serious risk of major, possibly permanent relapses.

In my ongoing study of websites, blogs and research article about ME, I have noticed a worrying trend, a trend which I believe is a direct consequence of the fact that the medical advice we get in the UK (and many other countries) is that CBT and GET are ‘safe and effective’ treatments.

Going back to Ramsay and Acheson, there is clear optimism about the possibility of a favourable outcome, even a complete recovery, provided the patient is allowed or forced to rest (Ramsay notes the complete recovery of three patients who were so ill they were brought into hospital in a coma!)[2]

nancyblood_redtint

Caption: Photo is one of a set made from a sample of the author's blood, immediately fixed, micrograph dated 8/7/2010.  The author has had ME since 1986; Dr Les Simpson said that the shape populations were consistent with chronic ME.  Micrographs taken by David, McCarthy, Experimental Officer, Electron Microscopy Unit, The School of Pharmacy, University of London.  (David.McCarthy@pharmacy.ac.uk)

During subsequent years and up to the present, the prognosis for recovery has become much less optimistic. More and more, it seems to be assumed that ME is most likely to become chronic, and even to worsen into a state in which the patient is completely bedridden and requires help with every physical function. Some are even beginning to think that it is a ‘progressive’ illness - that its natural course is to get worse over time, leading to the premature deaths reported in Jason’s research.[8]

No one, as far as I am aware, has put these two sets of information together and publicly drawn the conclusion that these ‘safe and effective’ treatments are changing ME from an illness from which it is possible to recover into an illness in which the most frequent outcome is that it becomes progressively worse.

And still the psychiatrists blithely assert that ME is a ‘functional somatoform disorder’ - symptoms without a biological foundation, claiming thereby the right to impose these treatments on us.

These are questions of medical politics. In the meantime, we need to do as much as possible to work towards recovery, and this paradoxical illness requires that we do so by adopting an invalid life-style as early as possible, in order to create the possibility of recovery. When we are a bit better, many of us will want to join in the efforts being made to change the culture around ME, as has happened in Norway.

In the meantime, our carers, who take on the physical burdens, often in the face of uninformed criticism and scepticism, need some words of encouragement:

To you courageous and overworked helpers: If you’ve been watching the Olympics, you have seen athletes at the very limit of their strength - the tearful collapse at the end of the marathon, the race, the boxing match, the weight-lifting. At that point, no one would suggest to them that what they needed to do was more of the same, that immediately running another race, or lifting another weight, would be good for them. You know that pushed beyond that limit, something would give, some damage would be done. Their coaches will be taking care of them, making sure they let their muscles have a chance to recover.

Your patient, because of failure of the normal muscle metabolism, reaches that point after the slightest effort. They are already in that state - that is the nature of ME - they are at the end of their marathon, all day, every day. If you can understand that, you can become the coach who is determined to protect your athlete from the damage that is done when anything further is asked.

This protective mind-set may help you to understand what is needed, how important, how valuable your contribution is. You may feel as though you are just doing one unrewarding chore after another, endlessly;  remind yourself that every chore you do is helping to create the possibility for your athlete to recover. There are no medicines, as yet; it is your help that is the medicine!

And finally, in the words of the person who has dealt with me for the past twenty years: When you start having fantasies about putting banana skins around the place, you probably need a break!

Some Useful Websites

National Alliance for Myalgic Encephalomyelitis www.name-us.org includes definitions and articles from the earliest researchers - Ramsay, Acheson, Dowsett.

One Click  www.theoneclickgroup.co.uk  Put ME/CFS into their search engine to find an article Mobilising ME/CFS Charities to Smash Flawed PACE Trial Results, by Lara Hessler, 14/4/2011. This explains the changes to the disability assessment system as of that time (there are further changes taking place at the moment - August 2012). Her suggestion is that ME Charities should pay for individual patients to have medical tests (not allowed by the NICE Guidelines) to prove that they are not suffering from ME/CFS as defined by PACE, but have a biologically-based condition.

You can access the full text of the Myalgic Encephalomyelitis: International Consensus Criteria by putting this into their search line and clicking onto the Google reference, which will bring up a page on it, go to the bottom of the page and click onto ‘Full Text’.

For a very scientific explanation of why CBT and GET are harmful, go onto One Click, and type in ‘Twisk and Maes’.

Invest in ME, www.investinme.org  provides reports on research and on their annual  conferences. This is the source of the information about development in Norway - the Rituximab trials, in which some patients have been cured. These have resulted in a government apology to people with ME/CFS who have been told their illness was a ‘behavioural’ problem, and treated with CBT and GET.

ME-CFSCommunity, at www.me-cfscommunity.com , or www.cfsknowledgecenter.ning.com will take you to a very helpful site for the most recent research, with comments by the moderator. Also there are some good forums for special topics, and you can join chat groups.

IACFSME www.iacfsme.org  This is a US based site, which is announcing the formation of a new journal, also they take a definite stand against the proposal to label ME a psychiatric problem in DSM V.

MEActionUK, at www.meactionuk.org/ or on Facebook, MEActionUK, www.facebook.com/pages/MEActionUK/287426748781 Useful for following the politics and medical politics of ME.

Bibliography

1. Acheson, A D. The clinical syndrome variously called behign myalgic encephalomyelitis, Iceland Disease and epidemic neuromyasthenia. [book auth.] Byron M Hyde and J A Goldstein. The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. s.l. The Nightingale Foundation. 'In the management of the acute phase, absolute rest provides the best outcome' 'The association of premature rehabilitation with relapse is well described'. 1992.

2. Ramsay, MA. Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath. National Alliance for Myalgic Encephalomyelitis. [Online] 1986. [Cited: 6 September 2012.] Contains quotes re rest best treatment, incapacity directly related to continued exertion. www.name-us.org/DefintionsPages/DefRamsay.htm . Myalgic Encephalomyelitis.

3. The Drug and the Possibility of Changing Everything. Jelstad, Jorgen. 1, s.l. : Invest in ME. Journal of IiME, Vol. 6, pp. 13-17. Page 16 Norwegian Gov't apologises to ME patients for treating ME as a 'behavioral' problem, recommends against CBT and GET. May 2012.

4. Chronic fatigue syndrome eased by cancer drug. Coghlan, Andy. 2836. New Scientist. Small article, significance in challenging the Wessely School beliefs not recognised / developed. 26 October 2011.

5. NHS National Institute for Health and Clinical Excellence. CG53 Chronic Fatigue, Myalgic Encephalomyelitis. www.nice.org.uk . [Online] [Cited: 3 August 2012.] Emphasis is on 'maintaining and if possible, gradually extending an individual's physical capacity'. August 2007.

6. ME Association. NHS specialist services throughout the UK. ME Association. [Online] [Cited: 10 August 2012.] Provides staff lists :Mostly psychiatrists, psychologists, OTs, Physios, Rehab. www.meassociation.org.uk/?page_id+1382  .

7. Spotila, Jennie. Exercise Testing and Using a Heart Rate Monitor. Occupy CFS. [Online] Occupy CFS. [Cited: 5 September 2012.] Gives a very detailed explanation of the role of reaching/exceeding anaerobic threshold in ME/CFS. www.occupycfs.com/exercise-testing-and-results/. 3 July 2012.

8. Causes of Death Among Patients With Chronic Fatigue Syndrome. Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S. 7, s.l. : Taylor & Francis Online. Health Care for Women International, Vol. 27, pp. 615-626. Main causes of death: heart failure (30 yrs younger than av), cancer, suicide, 10 years younger than av. 2006.

Comments:

  1. No Article Comments available

Post Your Comments:

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

  • FLEXXICORE EXERCISErs

    The FLEXXICORE exercise revolution: transform your fitness regime with 2 exhilarating exercisers

    www.FlexxiCore.com

  • mycology research MRL

    MRL markets mushroom products food grade US & Netherlands GMP standards. Health Professional Videos

    www.mycologyresearch.com

  • nutrition and cancer

    by Sandra Goodman PhD The latest scientific research regarding Nutrition and Cancer. Full details at

    www.drsgoodman.com

  • Accredited MASSAGE

    Massage training for a new career or career development; absolute beginner to experienced therapists

    www.accreditedmassagecourses.co.uk

  • BCNH college Nutrition

    & Health provides top quality nutrition education with ongoing support for students and graduates.

    www.bcnh.co.uk

  • Seaweed as Superfood

    Comprehensive nutrient balance found in no other natural food but seaweed: colon health, weight loss

    www.seagreens.co.uk

  • PROFESSOR Sheik IMAM

    Professor Sheik Imam is a famous professional leading African Healer who works with powerful spirits

    www.besthealer.co.uk

  • Ultimate Body Detox

    Immune system support & heavy metal detox - 3 powerful products: ACS 200, ACZ Nano & ACG Glutathione

    www.resultsrna.co.uk

  • Dr Amir Cranio-Dental

    For TMJ, ME/CFS Fibromyalgia and MS symptoms contact Dr M Amir at amir@dramir.com Tel:02087803433

    www.dramir.com

  • active school Massage

    Courses, CPD workshops, seminars; continuing professional development novice to exper. practitioner.

    www.ukmassagecourses.com

  • SensiStop!

    All Natural Medicines for Allergy Asthma Eczema Candida Periodontitis, a safe allergy treatment.

    www.sensistop.dk

  • Beginner's Guide to ME

    Essential reading for people/carers with ME/CFS serious debilitating illness. Counteracts bad advice

    www.amazon.co.uk

  • Wegamed Matrix detox

    WegaMed Matrix holistic matrix regeneration treatment detoxification remove acids immune modulation

    www.complementary-medicine.com

  • The Naked Pharmacy

    Saffrosun Mood Balance Bergatone Weight Loss Natruflex Black Garlic Arnica Balm High Quality Natural

    www.thenakedpharmacy.com

  • health & fitness books

    Massage, sports injury, holistic, healthcare and specialists books written by leaders in their field

    www.lotuspublishing.co.uk

  • The Dove Clinic

    Treatment of: IBS; Allergy; Angina; CFS; Life Threatening Illness; consultations in chronic illness.

    www.doveclinic.com

  • Liposomal Nutrients

    Optimum system for nutrient delivery to cells - fully bioavailable vitamins absorbed and metabolised

    abundanceandhealth.co.uk

top of the page