hah! good points (esp the last) and using dodgy diagnostic criteria doesn't help either (in PACE case)
Forget rituximab! The DWP can cure you at the Job Centre!
- Thread starter Countrygirl
- Start date
And it is still 'under maintenance', but look at what has popped up instead by the founder of the Chrysalis effect!
http://www.merecoveryassociation.org/
This Association is a social enterprise, not for profit organisation, to educate, inform and inspire those suffering or dealing with M.E, Chronic Fatigue Syndrome and Fibromyalgia. inspire may seem a strange word to use in relation to debilitating conditions However, It is run by a group of likeminded people who believe 100% in recovery. All of the team here have either recovered themselves, have cared for someone that is now fully well or spend their working lives helping people achieve recovery, which is exactly why we aim to inspire those who need our help.
Firstly let’s qualify the word recovery here. Our definition of recovery is where a person has been free from relapse. We believe there can be a detrimental impact on recovery time and rate when people are left too long struggling with their symptoms. Sufferers and family members searching for answers can quickly become exposed to depressing statistics about likelihood of recovery. You may have come across articles, and books that quote statistics on the likelihood of these conditions becoming long term and therefore much of the information out there focuses purely on symptom management.
The effect of this has, we believe, led to a perception that recovery is for the lucky few.
There is a reason why that has been the case. It is hard to access positive information because the legislation around the word ‘recovery’ is very strict and has to comply with the Advertising Standards Agency. So in many cases those who have recovered or those who work in the recovery field have to censor what they can say.
So what makes us different?
It is our aim to make a huge impact on the way M.E, CFS and Fibromyalgia is perceived.
Why do we need this organisation?
We also know from those who have walked this path of chronic exhaustive conditions that each and every one who has recovered understands that there is no magic bullet. People can quite understandably crave a cure and wait eagerly for a virus to be identified or a wonder drug to be found. In the meantime over 17 million people worldwide suffer and wait for their lives and health to return to normal. The M.E, CFS and Fibromyalgia Recovery Association believes that it is this wait or limbo state plus exposure to a belief that their condition may worsen, that may cause people to lose hope and faith in recovery. This can lead to years of long term illness, which may severely restrict the quality of life for them and their families. The Association’s mission is therefore to support individual’s recovery by presenting information that upholds the idea that recovery is very possible
The association is funding to research cures or vaccines. Our fundraising efforts will begin with providing a positive portal of information, that takes the mystery and fear away, creating a space where those who have recovered can inspire those who are searching for answers.
The Association is supported by those who have personally experienced M.E but now feel fully recovered, along with those who have dedicated their working lives to helping others to recover. The Association has been awarded a small grant from The Big Lottery Fund.
We're here to help and hope you can join us
The ME Recovery Team
Firstly let’s qualify the word recovery here. Our definition of recovery is where a person has been free from relapse. We believe there can be a detrimental impact on recovery time and rate when people are left too long struggling with their symptoms. Sufferers and family members searching for answers can quickly become exposed to depressing statistics about likelihood of recovery. You may have come across articles, and books that quote statistics on the likelihood of these conditions becoming long term and therefore much of the information out there focuses purely on symptom management.
The effect of this has, we believe, led to a perception that recovery is for the lucky few.
There is a reason why that has been the case. It is hard to access positive information because the legislation around the word ‘recovery’ is very strict and has to comply with the Advertising Standards Agency. So in many cases those who have recovered or those who work in the recovery field have to censor what they can say.
So what makes us different?
It is our aim to make a huge impact on the way M.E, CFS and Fibromyalgia is perceived.
Why do we need this organisation?
We also know from those who have walked this path of chronic exhaustive conditions that each and every one who has recovered understands that there is no magic bullet. People can quite understandably crave a cure and wait eagerly for a virus to be identified or a wonder drug to be found. In the meantime over 17 million people worldwide suffer and wait for their lives and health to return to normal. The M.E, CFS and Fibromyalgia Recovery Association believes that it is this wait or limbo state plus exposure to a belief that their condition may worsen, that may cause people to lose hope and faith in recovery. This can lead to years of long term illness, which may severely restrict the quality of life for them and their families. The Association’s mission is therefore to support individual’s recovery by presenting information that upholds the idea that recovery is very possible
The association is funding to research cures or vaccines. Our fundraising efforts will begin with providing a positive portal of information, that takes the mystery and fear away, creating a space where those who have recovered can inspire those who are searching for answers.
- Funds generated will enable us to:
- Provide access to positive recovery and carer support via a helpline
- Create an educational sharing portal for those who work in the field of health.
- Run annual educational conferences by leaders in the field of recovery
- Provide educational workshops for carers and recoverers at our annual conferences
- Run free helplines manned by those who have recovered or those who have cared for those who have
- Subsidise workshops for those affected.
- Pilot trials to show effectiveness of holistic approach
- To develop initiatives that encourage Government and NHS to shift the existing mind-set and implement a holistic approach to treatment and recovery
- To develop initiatives for prevention of these conditions
- To provide an informative website that forms a portal for recovery information.
- To connect sufferers, carers and health practitioners to those who have experienced M.E, Chronic Fatigue or Fibromyalgia and now feel fully well.
- To provide educational articles and newsletters that focus on recovery not symptom management.
- To provide a free helpline manned by those who have recovered or by those who cared for those who have.
- To deliver conferences by leaders in this field who will teach the ‘what happened' and the 'what to do' about it for sufferers, carers and those who treat these conditions.
- To work with the government and NHS bodies to implement step by step Recovery Plans.
- To run controlled trials to demonstrate effectiveness of holistic approaches on recovery rather than traditional allopathic intervention.
- To change the mind-set around recovery worldwide.
- To develop prevention and recovery initiatives.
The Association is supported by those who have personally experienced M.E but now feel fully recovered, along with those who have dedicated their working lives to helping others to recover. The Association has been awarded a small grant from The Big Lottery Fund.
We're here to help and hope you can join us
The ME Recovery Team
Disgraceful!
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Founder
Elaine Wilkins
ME, CFS AND Fibromyalgia Recovery and Wellbeing
Elaine suffered for 6 years from severe M.E/ Chronic Fatigue Syndrome this illness meant she had to give up her training business and sell her home. Now completely well her mission is to ensure that every person experiencing the symptoms of a fatigue related condition has access to information about recovery and access to those who can offer a comprehensive recovery plan.
She says ‘The time has come to face up to the fact that the conventional methods of treating people have to change. Sending a person home without a plan is simply not acceptable. It is crucial that sufferers learn what is going on inside their body and what to do about it. A multi-faceted condition needs a multifaceted approach tailored to the individual. These conditions become entrenched due to lack of a treatment plan. I developed a recovery programme that enables a person to learn about recovery not symptom management. I believe health practitioners need to partner with their patient or client and support a person with a step by step recovery plan that empowers them as they regain their health.’
She has two grown up children and two grandchildren and has been happily married to her husband Rob for 28 years.
Elaine Wilkins Professional Biography
Elaine Wilkins
Elaine suffered for 6 years from severe M.E/ Chronic Fatigue Syndrome this illness meant she had to give up her training business and sell her home. Now completely well her mission is to ensure that every person experiencing the symptoms of a fatigue related condition has access to information about recovery and access to those who can offer a comprehensive recovery plan.
She says ‘The time has come to face up to the fact that the conventional methods of treating people have to change. Sending a person home without a plan is simply not acceptable. It is crucial that sufferers learn what is going on inside their body and what to do about it. A multi-faceted condition needs a multifaceted approach tailored to the individual. These conditions become entrenched due to lack of a treatment plan. I developed a recovery programme that enables a person to learn about recovery not symptom management. I believe health practitioners need to partner with their patient or client and support a person with a step by step recovery plan that empowers them as they regain their health.’
She has two grown up children and two grandchildren and has been happily married to her husband Rob for 28 years.
Elaine Wilkins Professional Biography
- B.A.Hons
- Post Graduate Certificate of Education and Training
- NHS Coach, Trainer and mentor for health Teams
- Communications Lecturer Further Education
- Institute of Leadership and Management Accredited Coach
- ITOL Awarded Programme Trainer
- Trainer and co-ordinator of Coaching initiatives for vulnerable young people.
- M.E. / CFS expert for Choice Health Magazine
- Author of Book - Finding M.E. The Authentic Self
- Author and Founder of ‘The Step Out Step’ Up Wellbeing through Empowerment programme for Women
- Director of The Chrysalis Effect Supported Recovery Programme
- Director of The Chrysalis Effect Practitioner Training Programme
- Author ILM Endorsed Wellbeing Coaching Accreditation
A comment on the Amazon site which is selling her book, claims she recovered from her severe ME by taking a course of thyroid medication. According to her book, she regained her health by finding her 'Authentic Self'. Personally, I never lost mine in the first place.
https://www.asa.org.uk/Rulings/Adju...s-Effect-Ltd/SHP_ADJ_280250.aspx#.VdKtwWbTVoM
The advertising standards authority (ASA) upheld a complaint about Chrysalis Effect advertising recovery from ME. 19th November 2014.
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The advertising standards authority (ASA) upheld a complaint about Chrysalis Effect advertising recovery from ME. 19th November 2014.
.
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http://www.getyourlifebackfromme.com/practitioners/guide
The chrysalis Effect teaches its practitioners to 'understand the ME mindset' , and to 'understand the underlying causes and emotional triggers...' .... 'Allowing changes to be made at a cellular level'
The chrysalis effect business sells 3 day training courses to alternative practitioners, and teaches them how to 'become a client magnet', attracting ME suffers as clients.
Elaine Wilkins background in multilevel marketing (senior director at Mary Kay cosmetics) is very evident in her advertising the Chrysalis Effect.
http://www.getyourlifebackfromme.com/practitioners/guide
The chrysalis Effect teaches its practitioners to 'understand the ME mindset' , and to 'understand the underlying causes and emotional triggers...' .... 'Allowing changes to be made at a cellular level'
The chrysalis effect business sells 3 day training courses to alternative practitioners, and teaches them how to 'become a client magnet', attracting ME suffers as clients.
Elaine Wilkins background in multilevel marketing (senior director at Mary Kay cosmetics) is very evident in her advertising the Chrysalis Effect.
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Chrysalis effect .... Offensively exploit an ME death in their commercial advertising, stating that ME sufferers don't believe in recovery and passively wait ... But, according to Elaine Wilkins and Kelly oldershaw, they themselves recovered because they 'believe' in recovery......
http://www.thechrysaliseffect.com/our-story
http://www.thechrysaliseffect.com/our-story
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[Satire]
This is so amazing!!! I wonder if I can send a letter to them like I would to Santa? To cure ME like that, they must be able to do so much! So can you please please help me cure my ME? And grow six inches taller. And regress my age by about twenty nine years. Oh, and give me wings. I would really like to fly!!!
This is so amazing!!! I wonder if I can send a letter to them like I would to Santa? To cure ME like that, they must be able to do so much! So can you please please help me cure my ME? And grow six inches taller. And regress my age by about twenty nine years. Oh, and give me wings. I would really like to fly!!!
http://apctc.com/expert-spotlight-elaine-wilkins/
'Master of Fatigue' Coach Elaine Wilkins says she is trying to get the Chrysalis Effect into the NHS
'Master of Fatigue' Coach Elaine Wilkins says she is trying to get the Chrysalis Effect into the NHS
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Bloody reality, stopping people from getting better. Best avoid it altogether then...
Maybe we can ask to be given hallucinogens to get away from reality?
Listening to her video, she became the patient of Dr Peatfield who specialises in thyroid problems. He promised her she would get better.....................by treating her thyroid problems(?) Many, of course, with this crippling condition do receive a diagnosis of ME or CFS before they are correctly treated, although not always successfully, of course. It is NOT the same as ME, although their advocates often aggressively claim it is.
Interestingly, if you listen to her video, you will hear her complain about the criticism she received from the ASA (2014), which suggests that this is a new 2015 website. Can this be confirmed? I posted the above link on that understanding. She also mentions that other 'successful' practitioners from other 'alternative' methods of 'treating' ME (LP?) are wanting to join her but have been targeted by the ASA.
She is just saying on the video that one of her practitioners successfully enables children to recover. (!)
She sounds passionate and creates the impression that she believes her message, but she clearly has little concept of the nature of the disease.
Interestingly, if you listen to her video, you will hear her complain about the criticism she received from the ASA (2014), which suggests that this is a new 2015 website. Can this be confirmed? I posted the above link on that understanding. She also mentions that other 'successful' practitioners from other 'alternative' methods of 'treating' ME (LP?) are wanting to join her but have been targeted by the ASA.
She is just saying on the video that one of her practitioners successfully enables children to recover. (!)
She sounds passionate and creates the impression that she believes her message, but she clearly has little concept of the nature of the disease.
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Targeted by the ASA. It's those pesky facts, at it again.
From her website:
If setting up the victim / patient to be blamed in this way is an example of her empathetic holistic approach then she can take her map and ...
Maybe I'm being too harsh and we should give her methods a go before criticising. How about we all really believe strongly that more funding for biomedical research is needed. We could even set up a synchronised chant or something. If it works, I'll take back my words and sing her praises.
If setting up the victim / patient to be blamed in this way is an example of her empathetic holistic approach then she can take her map and ...
Maybe I'm being too harsh and we should give her methods a go before criticising. How about we all really believe strongly that more funding for biomedical research is needed. We could even set up a synchronised chant or something. If it works, I'll take back my words and sing her praises.
Setting up a "social enterprise, not for profit organisation" can, in some instances, be used as a tax dodge.
For the avoidance of doubt I would like to make it clear that the above statement is in no way intended to caused harm to the reputation of any organisations currently under discussion on this thread.
For the avoidance of doubt I would like to make it clear that the above statement is in no way intended to caused harm to the reputation of any organisations currently under discussion on this thread.
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Saying "Have the right mindset", or "believe that you can get well", otherwise the program won't work, is just another way of saying "you are never allowed to question or criticise". She, like many other psychoquackers, has set up her program/method so that she gets to be 100% right all the time and immunity from criticism is built into the framework.
Is that something that someone who was genuinely interested in helping would do, deluded or otherwise? Smacks more of egomania to me. Even if she's deluded, she should be banned from taking money from the sick in return for a useless program that they are not allowed to have an opinion on or it won't work.
Is that something that someone who was genuinely interested in helping would do, deluded or otherwise? Smacks more of egomania to me. Even if she's deluded, she should be banned from taking money from the sick in return for a useless program that they are not allowed to have an opinion on or it won't work.