The Future Challenges: Replenish-ME

https://www.nice.org.uk/about/what-...rds-framework-for-digital-health-technologies

are they aware that NICE is currently completely reviewing the ME/CFS guidelines. Might it not be prudent to wait and see what they are?
Are the company aware of the statistics (patient surveys) of the percentage of patients reporting long term harm as a result of incorrect advise re exercise.
Are they really prepared to take this risk with patients wellbeing?

 

Does anone else get the impression that all this is just a way of diverting scarce resources to enable geeks to play with their tackle?

 

So they have taken on board the possibility that people might experience harm because this community has continued to highlight that.

But now I find this a bit sneaky -- it's not a proper trial but a 'real world validation'. So if people do report harms they are in no way obliged to report that. Is this how others interpret that?

 

"Ethics committee approval was assessed as not being needed." no surprise there.

 

At least it is an acknowledgement that all the ethical protections are ignored when dealing with ME patients.

 

Full evaluation report is here https://www.weahsn.net/wp-content/uploads/2021/12/The-Future-Challenges-Replenish-ME-FINAL.pdf

Has anyone heard anymore about Kiactiv?

 

I've only skimmed the paper linked in the above post, so not commenting on the use of the device. I was a bit concerned about the implications of one of the questionnaires used in the evaluation. Given that we have a couple of threads on Acceptance and Commitment Therapy I thought it was worth picking up on.

The Bath Centre for Fatigue Services(BCFS), in addition to ME (they call it CFS/ME in the paper), also see people with cancer, joint hypermobility, MS and Parkinsons Disease. The Kiactiv evaluation was only with what they call CFS/ME patients.

BCFS usual service offer includes:

"Fatigue and lifestyle management includes education and skills development in activity pacing and energy usage, gradual reintroduction of lost occupations due to ill health, including employment, management of stress and anxiety and values-based goal setting, using Adaptation Theory, Cognitive Behavioural and Acceptance and Commitment Therapy principles."

Evaluation included this self-report questionnaire:

"Patients were asked to complete a questionnaire at the start and end of the 12-week KiActiv® programme, this included:
● The eight-item Chronic Fatigue Acceptance Questionnaire (CFAQ-8), an adapted version of the eight-item Chronic Pain Acceptance Questionnaire (Fish et al., 2010). The CFAQ-8 includes two subscales:
o Activity engagement – the pursuit of life activities regardless of fatigue
o Fatigue willingness – recognition that avoidance and control are often unworkable methods of adapting to chronic fatigue."


This is the paper for the original scale that the CFAQ-8 was adapted from , but I can't access it.

Fish, R.A., McGuire, B., Hogan, M., Morrison, T.G., & Stewart, I. (2010). Validation of the chronic pain acceptance questionnaire (CPAQ) in an Internet sample and development and preliminary validation of the CPAQ-8. Pain, 149(3), 435-443.

 

Sicko stuff really isn't it.

How can conversion therapy for certain things be rightly getting outlawed and slated and yet this type of awfulness is sliding in under the radar and being funded by taxpayers and done by people claiming to 'help' or care about physical or mental health.

'avoidance and control' - loaded blinking terms to try and make people just doing what they have to in order to physically survive in situations that shouldn't exist look like unpleasant individuals too imo (and I shouldn't have to use that imo, but yes people are bad and strangely there isn't research into how if you prime someone by telling them an individual is a perfectionist with avoidance and control issues does it make you less likely to be kind/accepting/nice/give the time of day to them just as there isn't one for checking everyone gets wet if they stand unclothed in the rain for an hour)

 

Especially when what is actually "accepted" is the fact that medicine refuses to take this seriously and put in an adequate effort. Because it's the only reason people have to suffer without any help. It's not because of biology or physiology, it's human folly and ineptitude.

I don't accept that. I will never accept that. These people can be content with their own failure but being the person who is failed in this relationship, I absolutely do not accept other people failing at their job and going through this mediocre ritual that only exists to reward them explicitly for failing.

 

A psychobubble world, where the money flows freely and eminence-based ideas are rewarded.

 

It's a bit odd how Tommy Parker is described as CEO of Ki Active(R) when there is no company registered under that title - https://www.weahsn.net/2020/10/meet-the-innovator-tommyparker-kiactiv/ and https://kiactiv.com/ Ki Active seemingly is only an internet construct - ownership of the website is obscured on who-is registration searches. The actual ownership of the Ki Activ(R) Trademark* is listed as KI HEALTH INNOVATION LIMITED however the most recently filed accounts show this company to be dormant and it lists no substantial assets. The sole director of the company is Andrew Frederick Parker, and the company address is 1, Duchess Street, London, England, W1W 6AN. Andrew Frederick Parker is also the sole director of Ki Performance Life Style also registered at 1, Duchess Street.

Ki Performance Life Style* filed its year to October 2021 accounts in March 2022 - pdf = https://find-and-update.company-inf...gyNWFkaXF6a2N4/document?format=pdf&download=0 these show intangible assets valued at £1,130,628 intangible would accord with the book value of something such as trade mark.

Other than the name there's no indication of the relationship between Tommy Parker and Andrew Frederick Parker or between kiactive.com and Ki Performance Life Style though licensing of TM products would support financial flows.

UK TM search = https://www.gov.uk/search-for-trademark

Ki Performance Life Style = https://find-and-update.company-information.service.gov.uk/company/06738270/filing-history