Friday 30 June 2017

Three Dharma Gates to Buddhism, by Bhante Bodhidhamma

'Three Dharma Gates to Buddhism' by Bhante Bodhidhamma a talk given at the Golden Buddha Centre, Totnes on Sunday 14th May 2017. (About 30 minutes)

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Research: Unperturbed Cytotoxic Lymphocyte Phenotype and Function in ME/CFS | 30 June 2017

Published in Frontiers in Immunology | Primary Immunodeficiencies, 26 June, 2017.

Unperturbed Cytotoxic Lymphocyte Phenotype and Function in ME/CFS Patients

Jakob Theorell, Indre Bileviciute-Ljungar, Bianca Tesi, Heinrich Schlums, Mette Sophie Johnsgaard, Babak Asadi-Azarbaijani, Elin Bolle Strand and Yenan T. Bryceson.

Abstract
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a debilitating disorder linked to diverse intracellular infections as well as physiological stress. Cytotoxic lymphocytes combat intracellular infections. Their function is attenuated by stress. Despite numerous studies, the role of cytotoxic lymphocytes in ME/CFS remains unclear.

Prompted by advances in the understanding of defects in lymphocyte cytotoxicity, the discovery of adaptive natural killer (NK) cell subsets associated with certain viral infections, and compelling links between stress, adrenaline, and cytotoxic lymphocyte function, we reassessed the role of cytotoxic lymphocytes in ME/CFS.

Forty-eight patients from two independent cohorts fulfilling the Canada 2003 criteria for ME/CFS were evaluated with respect to cytotoxic lymphocyte phenotype and function. Results were compared to values from matched healthy controls.

Reproducible differences between patients and controls were not found in cytotoxic lymphocyte numbers, cytotoxic granule content, activation status, exocytotic capacity, target cell killing, or cytokine production.

One patient expressed low levels of perforin, explained by homozygosity for the PRF1 p.A91V variant. However, overall, this variant was present in a heterozygous state at the expected population frequency among ME/CFS patients.

No single patient displayed any pathological patterns of cellular responses. Increased expansions of adaptive NK cells or deviant cytotoxic lymphocyte adrenaline-mediated inhibition were not observed. In addition, supervised dimensionality reduction analyses of the full, multidimensional datasets did not reveal any reproducible patient/control discriminators.

In summary, employing sensitive assays and analyses for quantification of cytotoxic lymphocyte differentiation and function, cytotoxicity lymphocyte aberrances were not found among ME/CFS patients. These assessments of cytotoxic lymphocytes therefore do not provide useful biomarkers for the diagnosis of ME/CFS.

Comment from Dr Charles Shepherd, ME Association, Hon. Medical Adviser:

This is my report on this new immune system research based on a presentation at the 2017 Invest in ME Research conference. The full version of my report will appear in the August issue of ME Essential magazine:

Dr Jakob Theorell – Karolinska Institute, Sweden.

Dr Theorell’s research is focussed on people who have what are called immunodeficiency syndromes (i.e. their immune systems are not functioning effectively). In relation to ME/CFS, he has been looking at a specific part of the immune system orchestra called cytotoxic lymphocytes.

These are cells that combat intracellular infections with dysfunctional abnormalities being reported in previous research studies.

He started off by describing the way in which NK (natural killer) cells act by recognising infected target cells, locking onto these target cells, and then releasing what are called pro-inflammatory cytokines.

Several research studies have looked at the function and phenotype of cytotoxic lymphocytes in ME/CFS, but their role remains uncertain.

This study involved 48 people with ME/CFS (meeting Fukuda and Canadian criteria) in two independent cohorts from Oslo and Stockholm plus matched controls. The phenotype and function of lymphocytes in frozen and thawed PBMCs (peripheral blood mononuclear cells) was evaluated using flow cytometry and compared to cells from age and sex matched controls.

There were no consistent differences found between people with ME/CFS and healthy controls in the wide range of functional tests involving cytotoxic lymphocytes – e.g. cell numbers, activation status, target cell killing capacity and cytokine release. In addition, no clear subgroups were identified.

These results do not therefore point to a role for defects in lymphocyte cytotoxicity in ME/CFS. Neither do they support the use of NK cell function as a biomarker for ME/CFS.



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What’s on? Your guide to local events in the next seven days | 30 June 2017


Taken from the ME Association event’s calendar.

Saturday, July 1
3a Baird Road, Kirkton Campus, Livingston EH54 7AZ 
(next door to Lloyds Banking Group), 1-4pm

West Lothian ME Self-Help Group drop=in session held here on the first Saturday of each month, and on the third Tuesday of each month (between 2pm and 4pm). An informal session where users can drop in for a chat or play some games. This session will also host craft activities and therapeutic services such as Reiki and Hypnotherapy. Details of such activities will be posted on our website and Facebook pages as they are arranged. For more information, please contact Suzy Cairns, email: enquiries@wlmesh.co.uk, tel: 07804 586 553.

Tuesday, July 4
Cafe at The Ability Centre, Carmondean Road, Carmondean, Livingston EH54 8PT, 12.30pm

West Lothian ME Self-Help Group lunch meeting held here on the first Tuesday of each month. Please note refreshments and lunch are not provided but can be purchased cheaply from the cafe. For more information, please contact Suzy Cairns, email: enquiries@wlmesh.co.uk, tel: 07804 586 553.

Wednesday, July 5
RMA Club, War Memorial Pavilion, Dunn Cl, Portsmouth, Southsea PO4 9SB, 7pm

Foggy’s 2017-2018 World Tour Launch PAW-TY!The party will be a Foggy-tastic mixture of live music & fun!
For more details, please visit http://ift.tt/2tM9Yby and book yourself a ticket.

Wednesday, July 5
London Colney Community Centre, Caledon Road, London Colney, Hertfordshire AL2 1PU, 5pm

Yoga with the St Albans ME Group. Craft tables today (card making). Refreshments provided. Admission £2. Formore information about this group, please email Maxine Ellis at stalbans.m.e.group@gmail.com

 

If you would like us to promote your local events on our website and social media then please get in touch via admin@meassociation.org.uk


Note: before travelling, ALWAYS check that the event is still going ahead. And don’t forget to check the time and the venue – both of which may have changed since the original notification. You don’t want to confirm the date but then turn up at the wrong time or place. Although the ME Association makes every effort to ensure the accuracy of these listings, we cannot be held responsible for any errors that occur.




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Fall in love with the magic within you. There is magic within...



Fall in love with the magic within you. There is magic within you and around you feel it embrace it allow your heart to open to it. Our words have power give something a name and you give it power, magic. What do you call yourself? #priestess #priestessmiami #meditatemiami #sacredwombcenter #divinefeminine #goddess #s#spirituality #spiritualhealer #spiritualjourney #moonmothermiami #moonmother #womanrunes #magic #enchantment #spells #healing #energyhealing #wombhealing #wombwellness #wombblessing #wombhealingmiami #miami #miamilife #om #namaste



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CMRC 2017 Science Conference in Bristol: Deadline for research abstracts | 30 June 2017


Experts in neurovirology, imaging and orthostatic intolerance will take the lead for the fourth annual UK CFS/M.E. Research Collaborative (CMRC) conference, which will this year be held in Bristol on Wednesday 13th and Thursday 14th September.


Update: Abstract submissions
For any researchers who might like to display abstracts from their current research portfolio, the deadline for submissions has been extended to Friday 14th July. If you are interested then please complete the application form and return to the address provided.


The National Institutes of Health (NIH)’s Dr Avindra Nath will talk about his work on neurovirology and infections of the nervous system.

Blogging recently about the work of the NIH, its Director, Dr Francis Collins, explained that Dr Nath is leading “an extremely detailed and comprehensive evaluation of several dozen people with CFS/ME, focusing on those whose symptoms can be clearly traced to an infectious-like illness and who have been sick for less than five years. These volunteers will undergo a comprehensive battery of tests, including blood draws and brain scans, to help researchers learn more about the clinical and biological features of this disease.”

Other presentations (titles – to be confirmed) include:

  • autonomic intolerance by Dr Peter Rowe, John Hopkins Children’s Centre
  • imaging in research by Dr Matt Wall, Imanova, a translational research company that specialises in applying PET and MRI scanning techniques to improve drug development and health research
  • pain and CFS/ME by Prof Maria Fitzgerald, University College London
  • learning from other illness fields by Prof John Gallacher, Oxford University

and a talk by Prof Don Staines from Griffith University, Brisbane.

The conference programme – in draft – can be viewed, here.

Who can attend?

The two-day CMRC conference is open to professional and student researchers (undertaking a research associated programme at an academic institution).

Associate Members – that’s anyone with an interest in M.E. who isn’t a researcher – can attend on the first day of the conference.

It’s free to become an Associate Member of the CMRC – see ‘Becoming a member‘ in the Research section of our website and then download an application form.

Registration for the 2017 CMRC conference for Associate Members is £45. As the CMRC does not receive enough income to cover costs, it has to ask for this contribution, which is heavily subsidised to enable access to the conference for people with M.E.

If you are unable to meet the cost of the ticket but would still like to attend, please contact the CMRC (via Action for M.E.) to request a full/ partial waiver.

Grants for medical students

The ME Association will again be awarding up to 4 grants to medical students to help cover their costs of the registration fee, travel and accommodation at the conference. More details will follow in a separate website announcement in due course.

Previous conferences

Read and/or download reports of previous CMRC science conferences:



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Dumortierite Enhances Patience, Intellectual & Psychic Abilities

Dumortierite

Dumortierite enhances your intellect and amplifies and boosts psychic abilities. Learn how it teaches you to stand up for yourself, promotes patience and aids you to take control of your own life.



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💜happy Friday! #affirmation #healing #miamievents #miamihealing...



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Social media and mental health

Today, many of us use social media in a range of different ways, whether it’s keeping in touch with friends and family around the world, staying up to date with the latest news, or even using it to help us find our next dream job. There is no denying that social media is a powerful resource with the potential to be incredible valuable. Increasingly though, there are calls for more awareness around the potential impact that social media can have on our mental well-being. So, how do we ensure that we are using social media in a way that is best looking after our mental health?

Here we’ve put together our 5 top tips on how to look after your mental health while using social media:

 

Take a technology break

Today our smart phones are rarely out of our sight and so the temptation to scroll through news feeds is ever present. Make a conscious effort to take time out from using your phone, computer or tablet. Use this time to do things that you enjoy offline; focus on being in the present. Whether it’s going for a walk, listening to music, trying out a new recipe, whatever you fancy really, enjoy a bit of you time offline.

 

Acknowledge the filters

Remind yourself that what you see on social media is rarely an accurate depiction of reality, so don’t try and compare yourself to it. People share content on social media that has been specifically selected, edited, and touched up, in order to present a specific version of themselves. When people begin to compare themselves to what they see online, they can often end up feeling that they don’t quite match up.

 


Don’t neglect your offline relationships

Social media is certainly a great tool for helping you stay in touch with people, but make an effort to develop and maintain relationships offline as well. Face-to-face interactions and socialising are so important, so be sure you don’t neglect these in favour of simply focusing on digital interactions alone.

 

 

Allocate set times for social media

Set aside a specific time slots in the day for using social media. By separating social media off as an activity in its own right (which has a time limit) you are more likely to think about what you want to get out of your time online and actively engage with those that you’re connected to. This can be useful in preventing excessive time being spent endlessly scrolling through news feeds throughout the day.

 

 

Maintain a balance

Like most things social media is something that, when used in moderation, can be a great tool.  By simply being mindful of how much time you are spending on social media and how social media can influence your mood, you are putting yourself in a much better position to maintain a healthy balance!

The post Social media and mental health appeared first on Anxiety UK.



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50 People Share What They’re Grateful to Do Every Day

At night, when you think about how you spent your day, how often do you focus on all the things you had to do?

I worked. I ran errands. I went to the gym. I made dinner.

And when you tell someone about this kind of day, how often do you do it with a less-than-enthused tone?

I suspect this is the norm for many of us, at least during the workweek.

Commitments, to work and family, can engulf our lives and seem like chores, not choices and chances.

I distinctly remember one day, years ago, when I was rushing from one obligation to the next, stopping to remind myself that I had chosen the schedule I was keeping.

I had chosen to get up early to write, to accept the job that supported me, to go to yoga in the evening, and to do freelance work after that.

And I was fortunate to have had these choices to make.

These weren’t all things I had to do; these were things I got to do.

I got to devote time to my passion in the hours before and after my paid work, creating possibilities for my future.

I got to work a job that provided both pay and benefits, enabling me to take care of my needs, even if it wasn’t my dream career.

I got to stretch my healthy body and create mental stillness.

And in between all these things I had consented to do were lots of other beautiful little things I got to do.

I got to wake up to sunlight coming through my window. I got to walk by interesting people, trees, and buildings on my way to work. I got to eat delicious food from various restaurants at lunch. And I got to use my hands when typing on my computer—hands I could have been born without, or could have lost to some type of injury or tragedy, but hadn’t.

I get to do a lot of things worth appreciating every day. We all do.

We all get to do things that challenge us, fulfill us, excite us, and energize us. We get to live, love, laugh, and explore in far too many ways too count.

Since I’ve long been inspired by this idea of focusing on what we get to do, I decided to include this as one of the prompts in my newly released gratitude journal.

I decided to share this particular prompt on Facebook this past Sunday to see how other people would respond.

Over 1,500 people chimed in, creating a monumental list of blessings, many of which we all share but could easily take for granted.

Since I was inspired and touched by the list, I decided to share a sampling here.

I Appreciate That Every Day I Get To…

Health

1. Shelley White: Breathe. I received donor lungs nine years ago after my own lungs failed. I have Cystic Fibrosis. Just being able to wake every day knowing I can spend another day with my family is what makes me grateful to be alive. I appreciate life.

2. Kristi VanTassel McHugh: Wake up. I had open-heart surgery nearly two years ago, to replace a faulty aortic valve and repair an aortic aneurysm. When I was first diagnosed, I was told, “If it’s not fixed soon (the aneurysm) it will burst and you will die.” That was two days before Christmas, and I waited just over six months for my surgery. I am thankful to still be here, every day.

3. GusandMaggie Nosce: Be alive. I was born a congenital heart patient (blue baby) and was advised I would need a heart transplant by the time I was four years old. By the grace of God, I have never needed one, even though the open-heart surgery I received when I was days old is no longer in practice and is no longer advised to perform.

4.Manal Khatib: I appreciate that I can walk after a serious car accident eight months ago. Every day I had to relearn how to walk. This journey has made me appreciate my body and treat it with kindness.

5. Laina Amarantinis: Walk and stand. After three spine surgeries I am finally able to walk and stand more and more as the healing progresses. I am very thankful.

6. Mary Beth Hudson:Spend time with my family. I beat my battle with cancer; others in my family were not so lucky.

7. Linda Otto: Move my body. I can walk, run, lift, bend, etc., all with ease. This is not possible for many people. It can be taken away in an instant or gradually as we age. Your health, eyesight, hearing are never appreciated enough.

Family

 8. Anna Hunt: Spend time with my daughter. Soon she will be off to college and I won’t have her close. Hearing her laughter, knowing she’s in the next room, fills my heart with warmth. I appreciate that every day I get to see her.

9. Amy Albinger: Be with my family. Be with my parents, my husband, my sister, and niece. They are the reason I live today. They are my reason to get through each struggle. They are my definition of love.

10. Riddhi Solanki: I appreciate that I get calls from my parents and friends, as my current job isn’t in my hometown. They call me and talk to me so I don’t feel any more left alone.

11. Niquita LeValdo: I wake up to my child. He was born with a heart condition and needed surgery at two months old. The thought that he may not have been alive today gives me a new perspective and helps me appreciate every moment. Love your children, praise them, cherish them.

12. Lillivette Colón:‪ Keep my baby in my tummy one more day. Every day is victory.

‪13. Tezra Blake:‪ I appreciate every day I get to see and hear both my sons growing into awesome men, and that they aren’t ashamed to say I love you mom and check on me and ask how I am doing. Despite their age they still want my opinion on things.

‪14. Laurel Hausafus:‪ Have the memories of my sweetheart and husband in Heaven .

15. Cheryle Midgett: Spend another day with my ninety-four-year-old mom.

16. Anika Bruce:‪ Every day I get to hug my family. I love hugs, they’re life changing.

17. Nicole Werner-Sayre:‪ Stay at home to raise the tiny little human I created and help her grow up into a person I’ll be proud to add to the world.

18. Laurie Clemons: Give a hug and say I love you. We all need to hear it more.

19. Dawn Creason: I get to read and cuddle with the most precious little girl that I never thought I would have. I get to hear her giggle and I get to play with her.

20. Fiona James: Wake up happy and healthy with my wonderful family. Too many people don’t have that luxury. Thank you for reminding me how blessed my life is. 

“Little” Things

21. Elizabeth Sherriff: Have a roof over my head, fresh water, food, and a family around me.

22. Kathy Kellermann: Have a warm shower and a bed to climb into (especially in the middle of winter).

‪23. Jessica Grandelli‪: Eat food that nourishes and sustains my life. It is a privilege to live in a place with bountiful food.

24. Jacinta Harrington: Enjoy a cup of coffee while reading the newspaper.

25. Caroline Driver: Eat whatever I want and drink water straight out of the tap

26. Marsha Frakes Waggoner: Walk outdoors in the grass with my dog and see trees.

27. Heather Demick: Drink in the world through my eyes.

28. Yvonne Hernandez: Have a place I call home.

29. Alice Louise Pocock: Listen with my ears, see with my eyes, and love with all my heart.

‪30. Xuandai Hoang‪: Sit in front of my candle and relax.

31. Enchari Rivadeneira: Dishes. It means I have food, a kitchen, a family to share with, and I did it. I made through another day, whatever happened. It’s a beautiful thing, dishes.

32. Chloe Cunningham Sarno: Finish all the housework all in the same day. Ah clean house!!

33. Tammy Pillsbury: Lay my head down knowing I have a roof over my head, food to eat, a job that rewards me, a husband that loves me, friends and family whom I love, nature outside my door.

34. Michael Bell: Read. There is no aspect of life that I have derived more benefit and pleasure from, and I couldn’t imagine my life without it.

35. Danielle Yingling-Lowrey: Be with my babies, take care of my flowers, cook, drink coffee, be a friend, be a neighbor, be mama, be a daughter, be a wife, drive my car, take care of my house, giggle, laugh, read, smile at others…. so many things!

36. Nicola Wood: Wake up and just be me and appreciate how blessed I truly am!

37. Steve Kenney: Not feel the pain of starving, the pain of extreme thirst. Having a roof over my head, and AC. Having a few people who really care about me for me, not what I can do or give them. Not suffering from bad health. That’s it. Everything else is inconsequential.

Possibilities

38. Gena Pegg: I appreciate that every day I get another chance to do the right thing.

39. Bani San: I appreciate that every day I get to wake up in freedom and pursue whatever life I dream of.

40. Jayne Duncan Stites: I appreciate that every day I get to begin again anew!

41. Jim Zei: Have another opportunity to make things right—whatever right is.

42.Lechenda Crichton: Have one more chance to be better than I was yesterday.

43. Sherelle Myers: Use my body and working limbs for whatever I choose!

44. Angela Charlwood-Derbyshire:‪ Practice making better choices.

45. Linda May Knowles: To learn from the mistakes I made the day before.

46. Wizz Tomo: I appreciate that every day I get to learn new things.

47. Ashley Glenn: To be alive and experience whatever the new day presents.

48. Amy Brock: Breathe and do normal activities of daily living. There was a time that I couldn’t do such a great job of either.

‪49. Herb Daum‪: I appreciate that every day I get to make the world a kinder place.

50. Melissa Milligan: Be here. Not everyone made it through the night. Be grateful you’re still here.

I appreciate that every day I get to…

How would you finish this sentence?

You can read more about Tiny Buddha’s Gratitude Journal (which includes 15 coloring pages) on Amazon here. If you already have a copy, I’d very much appreciate a short review! 

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About Lori Deschene

Lori Deschene is the founder of Tiny Buddha and Recreate Your Life Story, an online course that helps you let go of the past and live a life you love. Her latest bookTiny Buddha's Gratitude Journal, which includes 15 coloring pages, is now available for purchase. For daily wisdom, follow Tiny Buddha on Twitter, Facebook & Instagram..

Get in the conversation! Click here to leave a comment on the site.

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Thursday 29 June 2017

Crystals for exhaustion - Crystals


Crystals for exhaustion
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Carnelian Stones For Motivation, Clarification & Action

Orange Carnelian

Carnelian stones aid you to take action towards goals. This power stone stimulates 3 lower chakras to aid your sex life and inspires ambition and drive. Helps you make career choices and decisions.



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Join me next week for my monthly womb blessing circle! This...



Join me next week for my monthly womb blessing circle! This month we will meditate heal share and discuss on reclaiming who we are and the power we hold as the sacred feminine. Contact me for more info! #priestessmiami #priestess #purplelotusspiritualhealing #wombhealing #wombwellness #wombblessing #womenempowerment #wombhealingmiami #wombblessingmiami #wombwellnessmiami #goddess #divinefeminine #divinefeminineenergy #spirit #spiritual #spirituality #sacredfeminine #sacredwombcenter #spiritualhealer #spiritualjourney #spiritualhealing #spiritualhealingmiami #moonmother #moonmothermiami #miami #miamilife #miamievents #miamihealing #om #namaste



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Top tips for Fundraisers

Fundraisers play a hugely important part in supporting the work we do! Here we have put together a few simply tips to help you with any of your fundraising efforts! If you have any tips of your own, we’d love to hear them in the comments section below.

If you are interested in fundraising for Anxiety UK, please email us at media@anxietyuk.org.uk to request your fundraising pack.

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My new essential oil crystal spray elixir is archangel metatron...



My new essential oil crystal spray elixir is archangel metatron healing spray. Can be used to spray oneself, home, office, sheets for balance, protection and connection to archangel Metatron. Crystals included in elixir are clear Quartz and black tourmaline. Available to purchase during my sessions and circles as well as my etsy store- PurpleLotusHealing contact me for more info! #archangelmetatron #metatron #sacredgeometry #crystals #crystalhealer #crystalhealing #crystalelixir #miamilife #yoga #reiki #healing #spirit #spiritual #spirituality #spiritualhealer #spiritualjourney #spiritualhealing #spiritualjourney #spiritualhealingmiami #metaphysical #miamilife #energyhealing #essentialoils #aromatherapy #om #namaste



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How To Stop Holding Yourself Back and Start Believing in What You Can Do

“Stop holding yourself back. If you aren’t happy, make a change.” ~Unknown

Growing up in a culture where physical beauty determines how successful you are in finding a job, a suitable husband, and a promising career, and most importantly, bringing honor to your family reputation, I was a disappointment to my family, especially to my mother.

She was the definition of a perfect beauty—5’6″, slim, big eyes, high-bridged nose, perfect skin, and gifted with charisma. I was the opposite.

As I got older, my mother’s negative words got louder and louder. They were a constant reminder that I wasn’t good enough; I was useless and ugly, and nobody would love me because of the way I looked. I was excluded from all of our family trips and left alone in the house for days with my grandmother. Because of how I was treated, I started to believe that I would be a loser for life.

At twenty-nine I thought I was healed, until one phone call changed everything and forced me to re-evaluate what I believed about myself.

I got a job offer to oversee one of the biggest commercial real estate investors in North America. The job consisted of creating twenty-two financial budget packages in three months, while convincing the client to sign a two-year deal with the company and restructuring the entire accounting department.

I was convinced that I could not do this job, despite all the encouragement I received from my husband and best friend. I knew it would be a great opportunity for me to advance in my career, but I wanted to turn it down because I believed wasn’t smart enough and thought there were better candidates out there.

We all grow up with both positive and negative memory banks, with one being larger than the other, thanks to our parents and the environment we were raised in. As we get older we add to our memories through our life experiences. Every time we encounter situations we’re not prepared for, we refer to our memories to support our decision making.

Mine was full of “You cannot do well in this position,” “You don’t have enough knowledge,” “Other candidates are smarter than you,” “You cannot wear these clothes since you don’t have the body for it,” “You need to wear more make-up,” and the list goes on. So it was hard for me to seriously consider seizing this opportunity.

After much consideration, I decided to sleep on it. The next day, I looked back at everything I’d done so far in my life and realized that if I kept holding myself back, I’d never get to where I wanted to be. Happiness would never become a reality for me. I knew I didn’t want to live a life of “what if.”

I decided to accept the job, and three months later, I submitted twenty-two financial budgets on time, got that two-year agreement signed, and completed the restructuring three months after.

Here’s what I learned along the way. If you’re holding yourself back, like I formerly did, this may help.

1. Change your attitude to reflect what you want to become.

Your attitude will either move you forward or backward. It’s greatly affected by what you believe, since what you believe determines the decisions you make. Your beliefs largely stem from your past—what people said and did to you and what you concluded those experiences meant about you.

Become aware of what people told you when you were a child and ask yourself if those statements were actually true. Study your accomplishments and your environment, go over what you have done so far and see if they align with the accused statements.

Here’s what I discovered when I did this exercise:

Untrue fact number one: I was ugly. And yet people outside my family have complimented me on my looks. At first it was hard for me to believe the compliments were genuine. However, as I observed and listened to the actions and words that followed, I realized that I am not ugly, as my mother led me to believe. We’re all beautiful in our own way, and the beauty on the inside is more valuable than what’s on the outside.

Untrue fact number two: I was stupid and not good enough, unlike my siblings. And yet I graduated with a business degree from a reputable school, went on to get an accounting designation, and now work as a Manager of Business Solutions for one of the biggest commercial real estate companies in North America.

Untrue fact number three: I was useless. And yet every two years, I would travel back to my home country and help the elderly, who were abandoned by their families, with the essentials they need to survive. I also donated money to rebuild old temples so monks and nuns can continue their studies and have a safe haven away from home—all with my own money.

These are just some of my personal experiences. Write yours down and use them to shed any negative beliefs that don’t fit into your present situation. You don’t necessarily need to get rid of every belief right away, but start with something, no matter how small it may seem, so you can start letting go of your past traumas.

2. You know more than you think.

Stop selling yourself short by saying, “I don’t know” and instead say, “I will figure it out,” and ask yourself “How can I do this better?”

You have the ability to ask for help and connect yourself to the right resources as part of your self-development journey so you can become more, know more, and prepare for the challenges ahead.

The moment I decided to accept the job, I knew that I didn’t know everything, but I also knew I had the ability to reach out and get all the tools I needed to complete the project.

3. Let people in.

I started to believe in myself when I decided to surround myself with the right friends and mentors, both from work and at home. I opened up to them about how I felt, what I wanted to improve, and how I wanted to move forward from there.

I believe that having the right people behind you is one of the most critical parts of forming self-belief. That may seem counter-intuitive, since self-belief comes from inside, but it’s easier to develop confidence when we have people in our lives who believe in us and motivate us to go after the things that will make us happy.

Don’t be afraid to reach out to those you feel comfortable with and let them in on what you’re going through. When you believe in yourself enough to reach out to others, trusting that you’re worthy of their support, you will become a magnet for opportunities that you never thought were possible for you. Take a chance, be honest, and life will surprise you.

4. See obstacles as opportunities.

Life will never stop throwing obstacles at you, no matter how much you try to avoid them. Instead of running from them, learn to see them as opportunities to make what you currently have better.

I used to throw in the towel the moment there was a problem or a glitch in my life and my job. These days, I ask myself, “What are these problems going to teach me? What is life trying to tell me? What are the lessons I’m about to discover?”

Obstacles are there to show you new lessons. The message behind them will only be revealed to those who work hard to overcome them.

What I have learned after successfully completing the project for my new job is that I can do practically anything if I give myself a chance and time to learn and grow. By giving myself a chance in this job, I learned how to approach people better and how to get things done faster, more effectively, and more efficiently.

5. Do not allow defeat to win over triumph.

Remember in the beginning when I said we all have a memory bank? There are two kinds of memory banks. One is “Defeat” and the other is “Triumph.” In the first you store all your memories of things you believe you haven’t done well; in the second, memories of times when you’ve succeeded.

Everything you’ve ever experienced lives in one of these memory banks, which you will withdraw from in the future to inform your decisions. Your choice will inform your habits and behavior, which ultimately dictate your success and happiness.

Be mindful and guard your mind carefully so you don’t allow yourself to withdraw from your “defeat bank account.” I didn’t, and that was what saved me at the end.

6. Embrace mistakes as teachers.

Don’t be too hard on yourself. Mistakes are part of life. I have learned to love tem. Though I don’t look to make mistakes often, they are my teachers in growth and self-improvement.

During my first job after graduation, I was friendly with a few people. We would have lunch together and share our thoughts on the company and our jobs.

Later on, they used the information I shared against me later. Thankfully, I didn’t lose my job, but it definitely hurt my chances for future promotions within the company.

Looking back, I’m glad I went through that early in my career, as it set a strong foundation for how I now interact with colleagues, which helps with my professional achievement7. Don’t give up just because things get hard.

If you really want something, you have to be prepared to seize opportunities, work hard for it, and never give up.

There were many times during my new job when I wanted to walk over to my boss’ office and give my resignation because every day it was a struggle to get just one thing done. However, deep down I knew that if I quit and went back to my old job, I would live an unhappy, unsatisfying, and regretful life.

Of course, that doesn’t mean you should never quit anything. You need to set goals that align with your values. If your values change along the way, as we all know may happen as we get older, it is okay to give them up and embark on a new journey. Knowing what you really want will help you determine when to give up and move forward, and when to stick to your guns.

You have the power to overcome the limiting beliefs that stop you from realizing your full potential and creating happiness. It starts with the choice to stop giving them power and start seizing new opportunities.

About Kolyanne Russ

Kolyanne Russ is the founder of Pinch of Attitude, a blog that focuses on attitude-building, self-improvement, and lifestyle design. She helps people draw an action plan to achieve a balance between success and happiness. Her goal is to share her personal experiences to help others build the life of their dreams and experience happiness in every area of their life.

Get in the conversation! Click here to leave a comment on the site.

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Wednesday 28 June 2017

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Inside the July/August 2017 Issue

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Spirituality & Health's July/August 2017 issue is now available.

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FEATURES

The Swim of Awakening

In the absence of data, we will always make up stories. It’s how we are hardwired. In fact, the need to make up a story, especially when we are hurt, is part of our most primitive survival wiring. But these stories are typically not true. By Brene Brown, PhD

Is Homeopathy Stupid?

Homeopaths believe, and their patients believe, and that combined fantasy works great until the body can’t heal itself—or so I believed. . . By Deborah Gordon, MD

When Your Practice Gives You a Shove

The invitation can upend your life in ways you never expected—and can create great joy. How will you respond? By John Backman

Real Love is an Ability: An Interview with Sharon Salzberg

Real love is no longer dependent on another person. Instead, love comes from a sense of inner abundance. It’s the natural overflow from a capacity you’ve developed within. By Sam Mowe

INNER & OUTER WORLDS

Inner Life: Wise Selfishness

A conversation with the Dalai Lama and Desmond Tutu on the realization that nothing beautiful comes without some suffering.

Practice: And This Is How the World Will Change

Adapted excerpt from Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief, by Joanne Cacciatore, PhD

Enlightened Diet: Are Dietary Supplements Really Necessary? and The Omega-3 Paradox

Relationships: Befriending Grief

Biosphere: Why It’s Better to Eat a Cow than a Hen or a Sow and Six Lessons from the Sea

COLUMNISTS

Roadside Assistance for the Spiritual Traveler: Did Slaves Sell Their Souls to Get Free? By Rabbi Rami Shapiro

Our Walk in the World: Distributing the Weight By Mark Nepo

The Happiness Track: The Simple Guide to Being Wonderful By Emma Seppala

The Heart of Money: I Don’t Want to Own “America” Right Now By Paul Sutherland

DEPARTMENTS

The Poetry Page: Jane Hirshfield

Toolbox: Ocean Aware

Reviews

  • Fulfilled: How the Science of Spiritulaity Can Help YOu LIve a Happier, More Meaningful Life by Anna Yusim, MD
  • The Secret Life of the Mind: How Your Brain Thinks, Feels, and Decides By Mariano Sigman
  • All Our Waves Are Water Stumbling Toward Enlightenment and the Perfect Ride By Jaimal Yogis
  • Strange Contagion: Inside the Surprising Science of Infectious Behaviors and Viral Emotions and What They Tell Us About Ourselves By Lee Daniel Kravetz
  • Radiance Mixes: Tibetan Bowls with the Mantras of Deva Premal by RadianceMatrix
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  • Pure Comedy by Father John Misty
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  • Nise: The Heart of Madness by Roberto Berliner
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ME Association Review: GETSET fails to demonstrate GET can significantly improve physical function | 28 June 2017


Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): a pragmatic randomised controlled trial

In view of the fact that the results from this clinical trial are going to form part of the research evidence that NICE will be examining over the coming weeks in relation to making a decision as to whether the 2007 NICE guideline on ME/CFS needs to be revised, MEA trustees decided that the MEA should make a very careful and thorough response to the paper in The Lancet.

This is set out below and is also available for DOWNLOAD.

For the benefit of anyone who just requires a summary of the key points and concerns we are making, our main criticisms of the GETSET trial are:

1.  GES had little or no effect on physical function and did not result in participants claiming that GES had any significant overall effect on their ME/CFS

2.  The study design – i.e. addition of a new primary outcome measure – was altered after the trial had started

3.  Patients were recruited using the very broad NICE diagnostic criteria for ME/CFS – which meant a significant proportion did not Fukada and are unlikely to have met the Canadian diagnostic criteria for ME/CFS

4.  The trial recruited an unrepresentative number of people who were likely to have been in the mild category of illness severity, could exercise, and were enthusiastic about taking part.  This is not representative of the overall ME/CFS population

5.  The trial relied on self-reported and subjective outcome measures rather than employing any form of objective outcome measure (e.g. use of an actometer) for measuring changes in physical activity levels

6.  Examining and reporting on the results after only 12 weeks of treatment is far too short to draw any meaningful conclusions about the efficacy and safety of GES

7.  The study was not blinded – for obvious reasons. However, we believe that this sort of approach to activity management, where there has to be considerable individual variation in approach, is not really suitable for assessment in randomised controlled trials that rely on subjective outcome measures

Dr Charles Shepherd
Hon Medical Adviser, ME Association


The ME Association Review:

The GETSET Randomised Controlled Trial for CFS | 28 June 2017

Introduction

GETSET was published in The Lancet on 22 June 2017. It was a randomised controlled trial in secondary care of a new approach for people with ME/CFS that used the principles of graded exercise therapy, delivered in a self-help booklet, with up to four sessions of assistance offered remotely by trained physiotherapists via phone or Skype.

The results from the two primary outcome measures suggest that Guided graded Exercise Self-help (GES) plus specialist medical care (SMC) improved fatigue to a greater extent than physical function when compared to the control group (SMC alone). Publication attracted little media attention in the UK although The Telegraph managed to roll-out an article with the headline, ‘Exercise can help chronic fatigue syndrome, study shows’.

ME Association trustees were unimpressed by the trial results or by media and other reports that focused on the main improvement in fatigue – made no mention of other symptoms including PEM – and did not seem to question why there was no significant improvement in the original outcome measure of physical function. However, we were pleasantly surprised by the mixed reaction from those experts assembled by the Science Media Centre, in particular the comments from Prof. Chris Ponting and Dr Simon Day.

Had the trial authors included objective measures – for example, actometers to record actual physical activity – it might have convinced more people that GES/GET plus SMC had been a largely ineffective approach even for people who were sufficiently able to take part. But despite the lessons from the PACE Trial (or perhaps because of them) these authors chose a continued reliance on subjective measures.

“We did not measure any objective outcomes, such as actigraphy, which might have tested the validity of our self-rated measures of physical activity.”

Our cautionary advice to anyone who is recommended graded exercise therapy (GET) – or its’ derivatives – remains the same. In our opinion GET is all too often applied in an inappropriate ‘one-size-fits-all’ generalised way, and delivered in a regimented and inflexible manner. It is based largely on the deconditioning theory for which there is now even less evidence. GES/GET in our opinion is an ineffective approach to management.

We continue to be extremely concerned by the many reported experiences of people with ME/CFS who have been persuaded by specialists to embark on courses of GET only to find it was inappropriate and triggered significant worsening of their health. And we maintain that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

Trial Basics

This was a 12 week trial that recruited 211 eligible patients who expressed a willingness to take part from two CFS/ME specialist clinics. Once they had been assessed, they were randomly assigned to either specialist medical care (SMC) which served as the control group, or SMC with additional guided graded exercise self-help (GES). Results are based on 12-week outcomes compared to data collected at entry (baseline). The authors will also publish a follow-up study examining outcomes at 12 months.

All those recruited met the NICE guideline criteria which requires ‘at least 4 months of clinically evaluated, unexplained, persistent, or relapsing fatigue with a definite onset that has resulted in a substantial reduction in activity and that is characterised by post-exertional malaise or fatigue, or both’, plus at least 1 of 10 other relevant symptoms.

The trial measured outcomes using 2 primary self-report measures, the 11-item Chalder Fatigue Scale (CFQ) (range 0–33; higher scores represent more fatigue) and the Short-Form-36 (range 0–100; higher scores represent better function). The SF-36 was originally the only primary outcome measure, and relates to generic physical function. Other secondary outcome self-report questionnaires were used, and future publications from the trial authors will reveal additional findings.

At 12 weeks, compared with the control group, mean fatigue score was 19·1 (SD 7·6) in the GES group and 22·9 (6·9) in the control group (adjusted difference −4·2 points, 95% CI −6·1 to −2·3, p<0·0001; effect size 0·53) and mean physical function score was 55·7 (23·3) in the GES group and 50·8 (25·3) in the control group (adjusted difference 6·3 points, 1·8 to 10·8, p=0·006; 0·20).

Fatigue therefore improved by 12.7% and physical function by 6.3% in the GES group when compared with the control group. The improvement in fatigue was described as being a ‘moderate’ effect size, while the improvement in physical function was less impressive and of small effect size. Limiting the analysis to those participants who met either Oxford or CDC/Fukuda criteria did not alter the headline results.

There were also considered to be no reported adverse events, leading the authors to claim that:

“GES is a safe intervention that might reduce fatigue and, to a lesser extent, physical disability for patients with chronic fatigue syndrome.”

The full details of the trial are open access and can be read in The Lancet.

Our concerns and observations: 

1. Despite one expert claiming that the protocol was published in advance of the trial beginning – it appears that in fact the protocol was published in 2016 – a year after the trial ended and a year before the trial was published

2. Perhaps more worrying, a completely new primary outcome measure – the Chalder Fatigue Scale (CFQ) – was added to the protocol after the trial began and 5 months before it concluded on 01 December 2015. It is not clear whether the subsequent update to the primary outcome measures will actually mean the CFQ and therefore fatigue will not be a focus of the 12 month follow up study, but that is the implication. Originally physical function was to be the only primary outcome, measured subjectively using the SF-36 (see below)

3. While the authors claim the NICE guideline is most commonly used to diagnose people with ME/CFS in the NHS, a study from McDermott et al. (2014) determined that significantly more clinics were using CDC/Fukuda:

“Twenty-three of 30 (77%) used the Centers for Disease (CDC) 1994 (Fukuda) criteria making this the most common case definition for diagnosis. Ten services used the CDC 1994 criteria and the recent NICE 2007 criteria. Five services used the NICE 2007 criteria only. Three services offered no diagnostic service and only accepted referrals from patients with prior diagnosis.”

4. Table 1 demonstrated that not all participants recruited using the NICE criteria met the CDC/Fukuda or the Oxford criteria: 68% of GES-group met CDC/Fukuda (74% of control group), 78% of GES-group met Oxford (84% of control group). CDC/Fukuda does not have PEM as a required characteristic (unlike the NICE criteria, although PEM is an option), but it does insist on 4 symptoms in addition to fatigue (rather than at least 1 symptom from the NICE list of symptoms)

5. Our preferred criteria would be the London criteria (2014), but we would have been more comfortable with CDC/Fukuda (1994) and Canadian Consensus Criteria (2005) to determine diagnoses and make comparisons rather than NICE and Oxford which we believe are not fit for purpose

6. We would have liked to see the DePaul Symptom Questionnaire used in this study as it is a validated tool highly relevant to ME/CFS and capable of capturing symptom/illness severity and frequency. It could have demonstrated, for example, the extent to which the range of symptoms – including PEM – were affected by GES/GET and it would also have enabled participants to be compared between CDC/Fukuda, Canadian Consensus, and International Consensus criteria

7. We would also have favoured use of the WHO Disability Assessment Schedule, a 36 item questionnaire that we feel is more relevant to ME/CFS functionality and far more useful than the SF-36. Although WHODAS 2.0 is not as recognised a tool in ME/CFS research of this type, we feel it should be as it offers a much fairer picture of mental and physical function

8. Table 1 revealed that 9% of the GES group (11% of the control group) had a current diagnosis of major depressive disorder. This might have adversely affected those able to include and maintain an exercise plan – as exercise is generally recognised as being good for depression and an elevation of mood could have led to higher scores on self-report questionnaires – while it could have impacted those in the control group and resulted in lower scores

9. Use of the Hospital Anxiety and Depression Scale (HADS) is unfortunate but we recognise there is little recognised alternative. It is disappointing that a suitable tool has yet to be developed that is more relevant to ME/CFS and other chronic diseases where depression and anxiety can develop as co-morbid conditions, and yet is also capable of determining primary psychiatric conditions for exclusion purposes

10. Table 1 also provided some further insight into how much physical activity participants felt they undertook in a week. This average allows us to consider just how able-bodied participants might have been, but as there is no accompanying definition for ‘physical activity’ and no similar outcome data we cannot take any conclusions too far: GES group (mean per participant): 120 mins per week (range: 30-360) and SMC-only control group: 185 mins per week (75-570). It may be that this is one area future publications will address

11. We were astonished to read that the author’s recruited people with a high SF-36 physical function score (described in the protocol as being a ‘significant minority’ and scoring close to normal function). These participants were included as they ‘had substantial reductions in functioning in other domains, such as mental or social activity levels’, but their inclusion was also given as the reason for the introduction of the Chalder fatigue scale (CFQ) as a new primary outcome measure.

This effectively altered the purpose of the trial and turned the focus of the study towards fatigue, which of course came out on top in terms of improvement. It should be noted that if people were being diagnosed using a properly applied NICE criteria, their illness would have caused a “substantial reduction in activity” which would imply – to us at least – a low SF-36 score at baseline. It suggests to us that the NICE criteria were not properly applied and we do not agree with the decision to introduce the CFQ based on scores from a minority of participants who should not have been included

12. The above concern and the case studies given in the GES/GET booklet lead us to believe that the trial recruited an unrepresentative number of people who might best be considered mildly affected and/or who were ambulatory and able to exercise. Thus we feel that any results could not and should not be generalised to the wider patient population or to those moderately affected (as per the current NICE guideline)

13. We were amused by a comment from Dr Daniel Clauw (an advocate for GET and supporter of the trial), that seemed to validate both the ineffectiveness of GES on physical function, while making the point if it hadn’t been for the late addition of CFQ and the focus on fatigue, this study would be about as effective as some ‘alternative therapies’:

“In fact, although one might argue that some alternative pharmacological and non-pharmacological therapies might yield similarly small improvements in physical function or mood to those noted in the GETSET trial, far fewer available alternative therapies have this magnitude of effect on fatigue.”

14. Despite this the authors felt able to say, “We suggest that these findings show that a guided self-help intervention, when added to SMC, is a moderately effective intervention for fatigue, but has less effect on physical functioning, for people with chronic fatigue syndrome waiting for clinic therapy.” But, had fatigue and the CFQ not been introduced as subjective primary outcome measures, this trial would have been a failure

15. What remains unclear from this trial and other similar studies involving GET is whether or not people actually did more activity, or reorganised existing activities (e.g. by removing non-urgent ones, or delegating etc. and resting more) in order to take on activities relating to exercise and invest their time and energy in this trial. In our experience it seems likely that unless people with ME/CFS have attained a relative plateau in terms of symptom stability and are confident they can take on more, it is far more likely that new activities are attempted at the expense of others. This would also be the case when people are attempting to avoid the post-exertional malaise that is a characteristic part of this disease and/or the so-called ‘boom and bust’. The time and energy participants invested in this trial may also have led to bias when making self-reports

16. We were also concerned that cost considerations were really the driving force behind this remote-delivered therapy, despite the claims otherwise, rather than a desire to deliver the most appropriate and relevant clinical care. Although we recognise that patients with ME/CFS do have difficulty accessing secondary care, we feel remote services should be tailored to individual needs and allow experienced therapists greater freedom to work with those under their care to deliver more appropriate illness management and support. We would not want remote services to replace good quality physician-led specialist clinics

17. We feel that examining data at 12 weeks is too short a timescale to adequately measure the effects of this intervention, and may indeed reflect a peak in outcomes. And we don’t understand why the authors could not also publish the 12 month outcome data rather than making us wait

18. The trial authors said they, ‘…recruited adult patients (aged 18 years and older) attending these clinics who were diagnosed with chronic fatigue syndrome and placed on a waiting list for therapy’. This implies participants already had a diagnosis of ME/CFS and yet when assessing participants for the trial, the authors managed to exclude 236 (out of 683) for not meeting the NICE criteria. This is very worrying and implies a significant proportion of patients awaiting therapy in the secondary care, do not meet what should be a minimum UK clinical standard for diagnosis

19. We would also like to know what this might mean: ‘Patients were excluded if they… had physical contraindications to exercise.’ Only 9 patients were excluded for this reason, but if a definition were forthcoming it might provide useful insight into the kind of suitability that the authors regarded as necessary for people enrolled in a trial testing the efficacy of a therapy that employs the principles of GET

20. Table 2 demonstrated participant satisfaction with GES: 85% moderately or very satisfied, 10% minimally satisfied or dissatisfied, 1% moderately or very dissatisfied, 3% reported not receiving help. It is reasonable to say that participants were willing to take part in the trial and that those who found themselves in the GES group might have felt gratitude, and could have been biased by the investment of time and energy. But we also think it likely these results are a fair representation.

When people don’t have to leave their own homes but can remain in touch with therapists from the NHS by phone or on Skype, we think it likely there will be a higher degree of satisfaction than if people were left to get on with it by themselves and the same might be said for any therapy. We would like to see more information revealing the proportion of people who felt they actually followed the protocol, and it would have been useful had objective measures been used allowing a comparison to be made with what had been reported i.e. was the protocol actually helping people to do more physical activity and exercise on a regular (daily) basis or were participants just claiming that it did?

21. Table 5 reveals that 20 people in the GES group (21%) downgraded their physical function scores by 10 or more points at 12 weeks compared to when they began the trial. It is unclear why and it would obviously be interesting to know. Was this because GES was not working for them? Had it led to them being unable to follow any plan as rigorously as it was meant to be? Or was it because of the very nature of ME/CFS and a result of illness fluctuation? A similar number of people in the control group also reported such a downgrade, but again we don’t know the rationale and it would seem presumptive draw any conclusions

22. Table 6 demonstrated that in terms of Overall Health, 81% of those in the GES group felt there had been minimal change (87% in the SMC-only group), and only 18% felt there had been a positive change (5% in the SMC-only group). This doesn’t seem to compare well with the satisfaction scores revealed in Table 2 and perhaps goes some way to explain that satisfaction with GES had little to do with how effective GES was as a therapy. Again, use of actometers would have helped us to better determine how effective GES had actually been, as might a re-assessment at 12 weeks to see if any participant still met the entry criteria, and/or use of the DePaul Symptom Questionnaire and WHODAS 2.0. But perhaps the authors will provide more data when they publish the 12 month follow-up study

23. Likewise when participants were asked to rate overall change in their Chronic Fatigue Syndrome: 86% of the GES group recorded minimal change (85% in the SMC-only group), and only 14% of the GES group recorded a positive change (6% in the SMC-only group). It really doesn’t seem that GES/GET was seen by the majority of participants as having a significant effect on their primary health complaint and it made little difference if you were receiving GES or only specialist medical care. As before, actometers and the other measures mentioned above, might have allowed us to see more clearly where any improvements were made – and allowed us to better judge if efficacy had been achieved

24. Secondary outcomes did attempt to show how well participants followed GES. However, it should be noted that these figures come from the physiotherapists who were only in contact with participants up to 4 times via phone or Skype during the 12 weeks and not from the participants themselves:

“The physiotherapists reported that 43 participants (42%) adhered to GES completely or very well, 31 (30%) moderately well, and 30 (29%) slightly or not at all.”

We don’t know why participants were not asked to self-rate on this aspect of the trial – it would have made more sense. But what we don’t yet know is why the physiotherapists felt participants adhered e.g. only slightly or not at all. It would also have be useful to compare participant ratings of adherence with the scores from physiotherapists to perhaps better understand any bias

25. Finally, we are concerned these results will to be used by NICE to support their seriously flawed recommendations that everyone with mild or moderate ME/CFS should be offered GET – despite the validity of our main criticism that use of GES/GET had little to no effect on physical function and did not result in participants claiming it had any significant effect on their overall health or primary disease

Conclusions

So what is the potential risk if GES is implemented as a therapy in secondary care? GES is a new approach to an existing therapy, albeit one that relies largely on the patient implementing the principles of GET in their own home. It seems to have been well accepted by those who took part in trial – although they were not representative of the wider patient population (it would have been useful if the study had recorded illness severities at point of recruitment and after 12 weeks and then at follow up in 12 months for example).

There can be little doubt that eliminating the personal cost of travel to and from clinic would also be welcomed by some people with ME/CFS who could also remain in touch with specialists by phone or Skype. However, we don’t believe GES should replace what ought to be a tailored approach to more appropriate and flexible illness management delivered on a one-to-one basis by a specialist practitioner experienced in ME/CFS care who works with the patient to enable them to better cope and understand their condition.

Our concern is that GES will be applied as a ‘one-size-fits-all’ approach similar to both GET and CBT with the potential risk of long-term deteriorations to health and that it could replace existing specialist clinics or see funding reduced. We don’t believe the results from this trial justify implementation of this approach despite the reported satisfaction expressed by participants. As with GET patients are coerced into believing that they should ‘push through’ or tolerate any increase in symptoms following the adoption of a new exercise plan and/or increase in exercise intensity and ignore what their own body is telling them; and we believe this is fundamentally wrong.

One of the characteristic features of ME/CFS is PEM (post-exertional malaise) and yet this trial and others like it pay scant regard to the implications for PEM and other ME/CFS symptoms when patients are encouraged to increase the time spent exercising and to increase intensity. The risk to patients is therefore that instead of being alerted that doing more is potentially triggering a setback in their health, and being advised to rest and recuperate when symptoms flare and then to rethink or abandon this particular management approach; they could be pushed into a situation that causes a more comprehensive relapse.

While we were initially encouraged by one report in a blog from QMUL indicating that the kind of exercise GES might involve did reflect the seriousness of this illness e.g. walking for 1 minute each day, or walking for 5 minutes each day, these examples assumed walking was a reasonable exercise when for many e.g. those in a wheelchair, it is not. It was also noted that these particular examples were not reflected in the GES booklet.

Even the adoption of regular unguided and unsupervised stretching could be too much for some people particularly if attempted when standing. And the character, ‘Julie’ (GES booklet, page 11) – showering daily, travelling to and from work, working almost full-time each day of the week, doing the housework, socialising, cooking, even regularly watching TV and reading – strongly suggest that GES is aimed at high-functioning individuals and certainly not the vast majority of those the ME Association seeks to represent.

We remain concerned that practitioners can plan and deliver therapies with minimal regard to individual patient ability or available support, and that the therapies themselves have become far too standardised and inappropriate. We are also of the opinion that even if GES and CBT were delivered appropriately in clinic or at home remotely and tailor-made to the individual, they are not really suited for study in randomised controlled trials – particularly ones that only use subjective outcome measures.

You cannot standardise therapies or necessarily blind them like you can a drug for example, especially when therapeutic delivery should depend very much on understanding the needs and abilities of the individual and the ability and freedom of the practitioner to work with patients on a one-to-one basis and tailor their advice accordingly. People with ME/CFS have a variety of abilities and the condition itself is fluctuating, and while the people in this trial might have been mildly affected, applying the same standard approach to everyone with this disease would be wrong, and highly likely to not only lead to worse outcomes, but also to dire consequences for the individual.

Trials such as this one are giving some secondary care clinics carte-blanche to apply standardised, cost-effective approaches to people who cannot achieve what is expected because of the disease mechanisms underlying ME/CFS. Had we seen results from the employment of objective measures we might have better evidence indicating just how well participants actually managed to adhere to their exercise plans and goals. As it is we are not convinced by the results and can only fall back on the comprehensive patient-testimony provided by those who have actually tried GET in secondary care.

The ME Association continue to recommend the use of more suitable activity management strategies that take much better account of the disease and incorporate the principles applied in pacing – principles that allow patients the freedom to judge for themselves when to embark on appropriately tailored and suitable forms of activity.




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