Watch Jenny-May Clarkson interview Richie Barnett and Professor Warren Tate on Breakfast (via Facebook Watch).
New Answers for People Suffering with Chronic Fatigue – A new study on Chronic Fatigue Disorder (ME/CFS) is set to help health services better support those living with the disease. While it’s often labelled as depression or made up symptoms, the research confirmed ME/CFS is not a psychosomatic illness. Former rugby league football captain Richie Barnett shares his story with chronic fatigue this morning, along with Professor Warren Tate who has undertaken extensive research.
There are some therapies which are commercially based, and they come under many names. The Lightning Process is one that has been widely known. This is a psychological approach based on neuro-linguistic programming, a therapy which may have benefits to some people with ME/CFS, especially those who have depression or anxiety.
There have been claims made that the Lightning Process is a cure and some have said it did cure or significantly help them, but as yet no scientific trials have been done with a group selected from stringent ME/CFS research guidelines. It is possible responders may have conditions other than ME/CFS.
We are concerned by its promotion of it as a “cure” for ME/CFS. At present this is not scientifically proven. We have received reports from those who have spent a great deal of money to try this or similar treatments who have made no improvement, were not cured or have relapsed severely. The guilt experienced by those who are not cured can be devastating. On 27 September, 2017, the ME Association in the UK published this article on their website:
The following is a quote from Dr Charles Shepherd, medical advisor to the ME Association: “The Lightning Process” is not a treatment that we endorse or recommend for people with ME/CFS.
“Patient evidence, gathered from our members over many years, indicates that some people who have gone through the LP try to make rapid and unrealistic improvements in their physical and mental activity levels. However, this is followed by a relapse or significant worsening of symptoms. “Others who have gone through the LP programme report that they have spent huge amounts of money with no obvious benefit. “It may well be that there are some people with a general fatigue state, resulting from stress, emotional or psychological problems who could benefit from a ‘mind over matter’ retraining approach such as this. Such fatigue states are a separate entity and not to be confused with ME/CFS. “There has been a very significant growth in biomedical research globally into M.E. in the past decade. This over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients is totally out of step with emerging scientific evidence as to the cause of ME/CFS.”
Since Dr Shepherd wrote this statement, there has been even more robust scientific research into ME/FS as a neuro-inflammatory disease. One might do well to remember that multiple sclerosis was once seen as a kind of “hysteria,” until MRI machines were able to identify the lesions associated with this disease on the myelin sheath of the spinal cord. Research into the biomedical causes and potential treatments of ME/CFS is proceeding at a rapid rate and new therapies are being developed, including the possibility of using existing medications to treat the illness.
Along with providing support, it is the aim of ANZMES to provide sufferers of ME/CFS with accurate and up-to-date medical information. We encourage all patients, medical practitioners, family members or the general public to contact us with any questions you may have.
Associated Myalgic Encephalomyelitis Society of New Zealand
All are welcome to ME Auckland’s AGM, featuring guest speaker Dr Lynette Hodges.The talk will be held via Zoom. Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app). Details below
ANZMES is supporting Gavin in his project and will be using his work for awareness raising and to advocate for those with ME/CFS. We thank Gavin for this opportunity.
I am a photographer working on a portrait series on living with ME/CFS.
For this series, I am looking for people who are willing to sit for a portrait and talk about how ME/CFS has impacted them.
The purpose of the project is to increase awareness and understanding of how living with the condition impacts people’s lives in a very real way.
This series will consist of a portrait series and personal stories of those living with ME/CFS and will culminate in an online exhibition. As well as ANZMES having the images and stories for their use as a resource to further their advocacy work.
My partner lives with ME/CFS so I have an understanding of the condition and a motivation to increase awareness of it.
If you are interested in being involved and telling your story. Please don’t hesitate to get in touch
1. It is totally voluntary to complete the survey.
2. Completion of the survey is anonymous and so we will not know who has completed the survey or be able to link a person with their responses.
3. All the responses will be joined together so only group information will be used.
4. The final statistics from the survey will be shared with others. For example it may be shared with the media via a press release. This information will also be used for lobbying.
We are aware that ME/CFS has a large impact in a variety of areas so we could have included many areas in this survey however, we are also aware that completing a long survey would not be possible for many people with ME/CFS so we have not been able to include all the areas.
We would encourage you to complete the survey, as the more people who complete the survey the more notice others will take of the results. If you know others with ME/CFS please encourage them to complete the survey as well.
The results will be summarised in the Meeting Place and on the ANZMES website.
Dr Vallings is speaking in Hamilton at the Methodist Church, corner of Normandy Ave and Bader St, Melville, Hamilton 10.30 to 11.30 on Thursday 13th August 2020.
