Online pacing tutorial begins January 2019

Online Pacing Tutorial

US based ME/CFS & Fibromyalgia Self-help program hold quarterly online tutorials to teach the basics of pacing.

  • Open to to all English language speakers
  • 7 week course
  • Offered quarterly and conducted via email list server, the class is a structured discussion group
  • It is led by trained volunteer moderators, all of whom have ME/CFS and/or FM
  • Register now for classes that begin on Wed 21 Jan 2019. Registration closes on Jan 14.
  • Cost: $20.00 for course alone or $30 / $34 for course and book

The Three Parts of Pacing:

  1. Define Your Current Limits (Energy Envelope)
    The foundation for pacing is understanding your current limits. This includes limits on physical activity, and also mental activity, socializing, sense data, and stress.
  2. Adapt Using Pacing Strategies
    The second part of pacing is adjusting your life so you live within your limits. This is a gradual process, usually involving the use of multiple strategies.
  3. Expand Your Limits
    If you pace consistently, you may be able to expand your limits, doing more without increasing your symptoms.

The effects of pacing can be transformative, but progress is gradual. Learning to pace requires discipline, patience, and time, but you can see benefits immediately from even a small change such as those you’ll find in the tutorial.

NB   People with ME in Wales have found this course helpful, but please check that it is right for you. Ensure you have enough time and energy to make the most of it.

The ME/CFS and Fibromyalgia Self-Help Program is a non-profit organization offering a suite of low-cost and free online self-help courses, plus other resources for people affected by ME/CFS and fibromyalgia.

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MESiG support group Christmas party, Cardiff 8 Dec 2018

MESiG Support Group is holding their Christmas party on the 8th December in place of their monthly support group meeting on the 3rd.

  • 2 – 5pm
  • Bethel Church Community Centre, Llangranog Road, Llanishen,  Cardiff, CF14 5BJ

The Owl Sanctuary will be talking and showing some of their rescued birds.

Food will be provided, so please let them know if you hope to attend and if you need a lift. Bring a wrapped gift for the Bran Tub (max £5) so gifts can be shared.

More info: Vice Chair, Andrew,  07930535443

mesigwales@gmail.com      website

Next meeting: January 2019

 

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Carers Rights day 30 Nov 2018: Caring for your future

Carers Rights Day: Caring for Your Future

Having the right information at the right time can make all the difference when you’re looking after someone.

Becoming a carer of someone with ME is not something anyone plans for.

This year Carers Rights Day is on Friday 30 November –  a time to find out how to get the help and support you are entitled to.

Events on Friday

Aberystwyth     Cardiff & Vale         Llangefni       Milford Haven

Check out your local carers service for an event near you.

Information

Looking after someone: Information and support for carers – a guide in English or Welsh

Assessments: A guide to getting a carer’s assessment in Wales 

Your statutory rights in work

Ask Carers UK a question

Gwynedd Carers Rights charter

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ME Support group meets Llanelli, 1 Dec 2018

Carmarthenshire ME Group invites people to join them on Sat 1 December 2018 at 2pm in the Coleshill Social Centre, Coleshill Terrace, Llanelli SA15 3BT

More info: John James 01267233793 [pm only]   Ring first to check the meeting is going ahead.

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WG Consultation: Action on disability: the right to independent living

Consultation – Action on disability: the right to independent living

The Welsh Government is consulting on a draft framework and action plan that aim to:

  • tackle inequalities and poverty experienced by disabled people
  • promote equality of opportunity
  • provide support to more easily access resources and mainstream services.

Text, audio, and BSL video versions of the proposals are available in Welsh and English.

Submit your comments by 18 January 2019.

Disability Wales event & survey

Disability Wales will be submitting a response to Action on Disability: Right to Independent Living and would like to hear your views on the proposed plan.

Join them at an event on December 11, 2018, at the Catrin Finch Centre, Cardiff from 10:30 am – 3:30 pm.    Register here

Lunch and refreshments will be provided. Spaces are limited. Reasonable transport costs will be met for disabled people to attend.

Alternatively give your views by completing theirt short online survey

 

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Dr Anne McIntyre RIP

A long time advocate and sufferer of ME, Dr Anne McIntyre, died on Saturday 24th November 2018.  She had been living with rheumatoid arthritis for many years and developed pulmonary fibrosis as a complication of that.

Her book M.E. Chronic Fatigue Syndrome: a practical guide was written in the 1990s but is still considered by many to be one of the most helpful.

She will be remembered for her compassion and willingness to help, and for her work as advisor to the ME Association, and writing and speaking about ME.

 

Read tributes by Dr Charles Shepherd and her friend Jenny Wilson.

Watch Frontline documentary, presented by Dr McIntyre and featuring the Gilderdale family and Ean Proctor.

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Low sensitivity of abbreviated tilt table testing for diagnosing postural tachycardia syndrome in adults with ME/CFS

Low sensitivity of abbreviated tilt table testing for diagnosing postural tachycardia syndrome in adults with ME/CFS, by C (Linda) M van Campen, Peter C Rowe and Frans C Visser in Front. Pediatr., 16 November 2018

Introduction:

Orthostatic intolerance is common among individuals with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). In some ME/CFS case definitions, orthostatic intolerance is considered a core feature of the disorder.

Some studies have employed tilt table tests lasting 2-5 minutes to diagnose one common form of orthostatic intolerance, postural tachycardia syndrome (POTS). We examined the diagnostic yield of abbreviated durations of tilt testing in adults meeting criteria for ME/CFS, and identified the proportion with POTS misdiagnosed using testing of less than 10 minutes.

Methods:

Eligible participants were consecutive individuals satisfying study criteria for ME/CFS and POTS evaluated at the Stichting CardioZorg (SCZ, Hoofddorp, NL) between November 2012 and August 2018. Individuals being treated with medications commonly used to manage orthostatic intolerance were excluded. Head-up tilt table testing involved 15 minutes of supine posture then 20 minutes at 70 degrees upright. Only the data from the first 10-minutes upright were used.

POTS was defined as an increase in HR during a maximum of 10 minutes of upright tilt of at least 30 beats per minute (bpm), in the absence of either classical or delayed orthostatic hypotension. We measured the time until HR criteria for POTS were reached using survival curves, and compared survival curves between subgroups divided by age, sex, disease duration, and degree of hypocapnia during the test.

Results:

Of 627 individuals with ME/CFS evaluated during the study period, 155 met criteria for POTS. The median time to reaching HR criteria for POTS was 3 minutes. A two-minute tilt table test would miss 55% (95% CI, 48 – 63%) of those meeting POTS criteria over the course of 10 minutes upright. The median time to reaching HR criteria for POTS did not differ by sex, age, duration of ME/CFS, or hypocapnia during tilt.

Conclusions:

Abbreviated tilt table testing misses a substantial proportion of those ultimately diagnosed with POTS during a 10-minute tilt table test, and should be abandoned for the clinical diagnosis and in epidemiologic studies designed to estimate the prevalence of POTS among those with ME/CFS.

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ACTivate your life well-being course, Bridgend starts 28 Nov 2018

ACTivate your life courses

The course is based on Acceptance and Commitment Therapy which teaches people how to reduce their suffering and how to lead a richer, more fulfilling life by accepting the things they cannot control and making a commitment to do the things that they really care about.

We all experience suffering, pain and distress at some point in our lives, whether this be psychological or physical, so anyone and everyone is welcome to attend.

The course is run weekly over four sessions for approximately 2 hours with a break halfway through the session.

The four sessions:

  • ACT 1- You are not your mind
  • ACT 2- Facing up to your life
  • ACT 3- Being mindful
  • ACT 4- Living wisely, living well

Swansea

  • Bridgend Life Centre, Angel Street, Bridgend CF31 4AH
  • Room: Conference room
  • Wed 28 Nov – 19 Dec 2018     2 – 4 pm

The courses and workshops are free, self-referral and open access, so there is no need to book on or register, simply choose what you feel is the most suitable for you and turn up; feel free to bring someone along and spread the word. There is no attendance register, but it is recommended that you attend all of the sessions to get the most out of it, although you can always switch between courses to fit in with your commitments.

For more information contact the Living Life Well programme at Abertawe Bro Morgannwg Health Board.       07967612246      living.lifewell@wales.nhs.uk

Self help material can be used to improve feelings of stress, low mood, anxiety and other wellbeing difficulties.

NB  Some people with ME may find this course helpful, others won’t. Please check the details carefully to make sure it is suitable for you and you are well enough to attend

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Blood volume status in CFS/ME correlates with the presence or absence of orthostatic symptoms

Blood volume status in CFS/ME correlates with the presence or absence of orthostatic symptoms, by C (Linda) Van Campen,  Peter C Rowe and Frans C Visser in Front. Pediatr.  Oct 2018

Introduction:

Conflicting data have been published on the reduction of circulating blood volume in adults with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The aim of the present study was to compare blood volumes based on the presence or absence of orthostatic symptoms.

Methods and results:

12 consecutive adults with ME/CFS participated in the study. All underwent dual isotope blood volume measurement and were evaluated for a clinical suspicion of orthostatic intolerance (OI). The mean age was 34 (10) years, and median duration of disease was 7.5 (6-10) years. The mean (SD) absolute blood volume was 59 (8) ml/kg, a value -11 (7) ml/kg below the reference blood volume.

Of the 12 patients, 4 had no OI and 8 had a clinical suspicion of OI. In 8 patients with OI, absolute blood volumes were significantly lower than for the 4 without OI (56 [2] vs 66 [5]; p<0.05) as were the differences between the measured and the reference blood volume (-14 [2]; vs -4 [3]; p<0.02).

Conclusions:

Adults with ME/CFS had a significantly lower blood volume if they had a clinical suspicion of OI compared to those without a clinical suspicion of OI, as well as a significantly lower blood volume compared to the expected value. The data suggest that accounting for symptoms of OI could enhance the detection of the subset with reduced blood volume.

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A poem about Me and M.E – One stupid dot

‘What’s up TV’ presents a 2 minute poem by Stacy Hart: Me and M.E, how ‘One Stupid Dot’ makes all the difference

Stacy’s blogMama Chill…Stacy Hart…Runnin On Empty

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