The Chrysalis Effect Blog

Fibromyalgia Pain and Chronic Fatigue Recovery Research Initiative


Welcome to the Fibromyalgia Pain Recovery and Chronic Fatigue Research Initiative.

Firstly we know how tough it is to be dealing with the symptoms of fibromyalgia and chronic fatigue. So thank you for considering taking part in this important project. Please read the information below to see if this is something you feel enthusiastic about participating in.

For more information on how your data will be held please view our Privacy Policy

 

Applications for this trial have now closed.

If you would like to be considered for further trials please contact us directly: [email protected]

www.thechrysaliseffect.co.uk

What is it?

This is a project designed specifically for those diagnosed or suffering from fibromyalgia, chronic fatigue or have a combination of both as their primary health issue.

1. To expose those suffering from the unexplained pain of fibromyalgia or debilitating chronic fatigue to a new healthcare model that is recovery focused and explains the underlying causes to give context and understanding of their symptoms.

2. To measure the beliefs and attitude of participants in regard to their pain and fatigue prior to and directly after attending 4 presentations. This will be achieved by filling in 2 online confidential questionnaires. This will give us valuable information and evidence any changes experienced by participants. This is evidence required for a 3 pending NHS pilots to test making The Chrysalis Effect Recovery Pathway instantly available at point of GP Referral.

3. To identify a subset of 50 volunteers who fit the criteria for a research paper for The University of Worcester in which volunteers will follow The Chrysalis Effect Recovery pathway and submit the results of that experience for academic evaluation.

What are the benefits for you as a person suffering with Fibromyalgia Pain or Chronic Fatigue?

  • You will be first to access this ground-breaking model of recovery information and support that could positively impact the way you, and those close to you, approach your illness and your future.

  • It aims to support you as a patient to recognise the limitations of the ‘infection model of healthcare’ and why this may have contributed to poor recovery outcomes. To explore a pro-active holistic recovery model of healthcare that GP’s and consultants in the NHS are moving toward.

  • This could offer the Reassurance you seek that regardless of how long you have been ill that recovery is possible.

  • You will be shown the latest research on the way the brain interprets pain and discover the often hidden causes of chronic pain and fatigue.

  • You will have clear insight into what leads to a stuck cycle of pain and multiple symptoms that dramatically impact your ability to work, socialise and plan your future.

  • The sessions will also give you exposure to many recovered patients who have experienced your symptoms, diagnosis and know what that feels like.

  • Attend sessions from experts in recovery who have also recovered themselves.

  • An opportunity to attend a live Q and A session with experts and recoverers.

More about The Chrysalis Effect


The Chrysalis Effect is a non profit organisation that has been delivering an online recovery pathway for over 11 years in the private healthcare sector. It was developed by our founder, Elaine Wilkins. who experienced 6 years of chronic fatigue and pain before achieving full and sustained recovery.

Her experience was typical of many. She was offered anti- depressants, pain and sleep medication and offered a symptom management course designed to accept living with a long term chronic illness. With 2 teenage children this felt completely unacceptable to her and so she set about trying to find out what had caused her symptoms and what she needed to do to overcome them.

This took a long time trying to search while struggling with so many cognitive and physical symptoms. She felt like giving up many times. It took 6 years but she got there. Then she heard of a young woman who had committed suicide after suffering for 17 years on medication left with no quality of life.  She knew this had to change.

This led Elaine to research recovery. She says ' The medical model researches disease. I wanted to research recovery. To understand exactly what it takes to recover. I knew what I had done to recover and wanted to see if there were common themes in others who had recovered. I sought out other people who had been given a similar diagnosis who had recovered fully, and guess what? The same things came up over and over again, this formed the basis of a recovery programme and accredited health care practitioner training.

Since then Over 3750 patients have accessed the recovery pathway and today it has grown to become an international recovery community. The mission was to make sure that recovery is accessible to all at point of GP referral regardless of postcode.

Why are we doing it?


With so much recovery success it seemed like it would be an easy transition for the recovery pathway to be adopted by the NHS in England. This has been a long haul and has not been easy or simple.  The journey to securing funded places for patients on to an instantly accessible resource has been long and arduous.

Doctors and consultants are just as frustrated by the lack of CCG funding as we have been. They know first hand how long the waiting lists are for often very limited and patchy services and are keen to have a resource for their patients that offers the NHS a cost effective accessible recovery pathway. Doctors have submitted  funding applications and had them turned down.

However, we now have 3 NHS pilots pending, in Ellesmere Port, North Essex and Surrey which is fantastic, however, the next step is to provide independently evaluated evidence to the Clinical Commissioning Group who would fund a roll out of a recovery pathway. This is why your participation is so vital.

The Questions we have to answer are:

What will you be committing to as a volunteer?

You will be asked to fill in an online questionnaire.

Your personal details will be used for the purposes of the study only and will not be shared with any third party outside of this study.

Watch 4 recorded presentations over a period of 2 weeks beginning October 13th 2020

Session 1: Tuesday 13th October
Session 2: Wednesday 14th October
Session 3: Tuesday 20th October
Session 4: Wednesday 21st October
These sessions are pre-recorded but will be followed by a live Q and A session with Elaine on Tuesday 27th October

Complete a second questionnaire after watching the presentations.

Your personal details will be used for the purposes of the study only and will not be shared with any third party outside of this study.

 

Attend a live session explaining the Worcester 3 month recovery research project to consider applying as a participant on Wednesday 28th October at 11am

[This a provisional date to be confirmed]

 

What will we do with the results?


The results will be extrapolated and written up to be presented to NHS CCG all results will be anonymous and represented by percentages to demonstrate the results.

Worcester University Research - 50 Volunteers Required

On the live presentation we will be looking to recruit 25 participants with chronic fatigue and 25 participants with Fibromyalgia for the 3 month independent University trial. Recruitment for this will take place in late August and early September.

Participants will follow The Chrysalis Effect Recovery pathway for a minimum of 3 months and submit anonymous feedback to the research team.

Participants who meet the criteria for this project will be able to continue on the recovery pathway beyond the research project should they wish to. This will incur no cost to participants.

What's In the Sessions?

Session 1:
Consultant Rheumatologist Dr Alison Sabine and Trauma Specialist Kuljit Sehmi

Breaking Free from Chronic Pain and Fatigue

  • Diagnosis, Conventional Treatment Ladder moving away from a sickness model of Healthcare
  • The Latest Research into chronic Pain and the vital components in breaking free
  • Profiling – who develops Fibromyalgia?
  • The Contributory factors?
  • What prevents Recovery?

 

 

Session 2:
Elaine Wilkins, BA Hons, PGCE, ILM, CMI Accredited Coach

Dissolving The Mysteries of Chronic Fatigue Syndrome

  • Why CFS is misunderstood and Recognising the obstacles to Recovery.
  • Why, What and How the crucial Questions for recovery.
  • The Physical Domino Effect of Chronic fatigue.
  • A Road map of Recovery The 6 phases of recovery 
  • Joining The Dots - Discovering your personal Iceberg.

 

 

Session 3:
Dr Patricia Worby PhD

Was your Brain Landscaped for chronic pain and fatigue? 

  • What is the role of the brain in your experience of Pain and multiple unexplained symptoms?
  • What is ‘small t’ Trauma and what does it have to do with chronic exhaustive and pain conditions?
  • What are ACE’s and how do they landscape the brain ?
  • What do they have to do with halting or preventing recovery?
  • What happens to recovery outcomes when we use the Bio-psycho-social model.

Session 4:
Liz Hancock Fibromyalgia and Trauma Recovery Specialist

In Practice Working with CFS and Fibromyalgia Recovery

  • What problems does the current treatment model cause for patients?
  • The patients who recover - what do they do differently?
  • Understanding The Full Emotional Cup What contributory and Accumulative stress Factors can you relate to? -
  • Questions to consider
  • Post Session Questionnaire.