(Not a recommendation) (UK) "Chronic Fatigue Syndrome Conference: Costs, challenges and practice"

Are @Action for M.E. really supporting this? I will definitely be questioning my membership if they are. I've already given OHC far too much money for nothing, I don't want to be supporting them in any other way.

I was shocked by how unqualified and inneffective the OHC 'practitioners' were when I was there (as were several others on the 'course'). I was open minded but really couldn't believe the poor standard of facilitation. They didn't even teach what they offer well (regardless of the fact that what they offer is coping skills not a cure as they promise). If they genuinely did a good job of teaching coping skills and offered good friendly support then I don't think I would have so much of a problem but it was very poorly done. None of the people in my group got anything useful from it. I am appalled that the NHS are listening in any way. Unfortunately the OHC team are VERY good sales people. We need charities to be the voice of reason and to stand up against them not support them.

 

I didn't see any mention of their official involvement, but the lead from their SEE ME project is there.

 

Eww eeww eww eww EEEWWWW!
What on EARTH are the NHS doing getting 'into bed' with these people. I don't know much about the OHC but the Chrysalis thing... ugh. Just revolting.

 

Doesn't look that bad to me, but I understand concerns that some of the people involved don't look at the evidence very deeply and thus may be drawn to inappropriate conclusions.

 

I hadn't heard of the Chrysalis Effect before. Looking at the website, it's very reminiscent of the LP, even down to the 'independent practitioner' structure, which relieves the organisation of any real accountability. Total BS throughout, and implied claims of understanding the causes of ME/CFS/Fibro. Still, what a bargain:

link: https://thechrysaliseffect.co.uk/recovery-programme/

 

I joined years ago. I didn't know there was any controversy until I joined this forum. I don't really understand/haven't fully looked into that for myself so still a member. I found their helpline to be useful in the past. I used their information booklet for employers when I was still working and was glad to have it (it maybe wasn't perfect as it represents a very wide spectrum of illness but it was better than nothing). I also thought that their latest newsletter was good.

 

The Chrysalis Effect say on their website: 'It is part of our mission to educate the medical community, which we have been doing over the past year. We have met with several doctors who are able to educate others. In the UK we have met with The Health Minister and head of services for "long term and chronic conditions" (which actually is their label not ours).'

I've followed the blog of one of the women who is used as a 'success story' on the Chrysalis Effect website. As far as I can tell, she joined the programme, her health got worse and she spent four years housebound and incredibly ill and she has just now started to feel slightly better. From her latest blog post it doesn't sound like she is fully recovered. Yet on the website she is quoted as saying, "I am strong, fit and healthy again, and that is the best feeling in the world. Thank you so much!"

I'm on their mailing list (must signed up years ago). The CEO Elaine went to watch Unrest in Feb and the morning after sent a very emotional, angry email to everyone on the mailing list saying how manipulative and negative the film was, how she thought seeing it could prevent people from getting better. She said that she'd stood up to ask a question (read - tell everyone that she has the cure) after the screening and that Omar "shut me down". I imagine that what Omar actually did was refuse to believe her un-evidenced sales pitch. Anyway, it was a very personal, angry and unprofessional mailing. I was really shocked.

In the last mailing that I received she is talking about some kind of 'summit' that they held (and online thing I think). She says, 'On the final day of the online recovery summit we met the inspirational Dr Sumit Sharma from award winning Brockhurst medical practice who is funding the first ever NHS Pilot of our recovery programme.'

It's a really bad outfit in my opinion and it would be a disaster if the NHS started buying into it.

 

Can't the woman sue? If someone was using my image and pretending that I had benefited from something they sold, even though it wasn't true, I would be doing everything I could, legally, to get them to stop!

 

@Arnie Pye No, sorry I didn't mean to imply that it had been taken without her permission. I think she wrote it for them. I just meant to point out that although people may say that they are recovered (especially if part of the ethos of the program involves very adamantly focusing only on the positive) it doesn't mean they actually are recovered by any objective measures. Anecdotal stories are not solid evidence. I'm genuinely pleased for her that she is feeling better ofc. I always feel pleased when people are feeling better. She doesn't seem to be completely "recovered", she still has to take it easy, and this improvement seems to have been relatively recent, we don't know it will last, she might just be in a good phase. (For her sake, I hope it lasts.) Also, no evidence that The Chrysalis Effect had any impact upon this upturn in her health. Indeed, she seems to have been following their advice for many years before the improvement which might suggest that there was not a causal connection. I object to programmes like this using 'success stories' that are not validated in any way to sell what they offer as a cure.

 

@Tia Sorry, I'm completely baffled by this. Why would someone join a program, get worse, and then write that they are strong, fit and healthy again?

That's a rhetorical question by the way - I don't expect you to know how someone else's mind works.

 

I know nothing about that individual case, but I know a lot of patients who are so routinely mistreated because of their health that they feel very grateful to anyone who seems to take their concerns seriously and treat them kindly. I've heard lots of variations of 'I'm so lucky to have found such a good doctor... I've not been one of the lucky ones with treatment, but...'.

Loads of quacks can pick up glowing testimonials from grateful patients who want to try to help someone they are pleased with and has some power over them. Some of these patients will have happened to have improved while under their care, so even more exciting things can be claimed!

 

This. People here and on other forums get improvements after years through all manner of things, or through nothing discernible. If I'd been paying someone £24 a month for a number of years, I'd likely attribute any improvements to their programme, too.

And the £24 is just for access to audios, videos, newsletters etc., and an initial 30-minute Skype consult. Anything else and "... fees for a wellbeing package of 1:1 tailored support would need to be discussed directly with the individual practitioner" so who knows how much the woman Tia has been following spent.

And of course, as with the LP, this whole thing inoculates itself against criticism from paying customers by relentlessly programming them with the 'always positive, never negative' message. And if anyone gives up on them and starts criticising the programme then their failure to recover is down to their negative thinking.

As far as I can see, there's no actual ongoing interaction after the initial consult. Just access to their library of vids and audio, and "Recovery coaching sessions and touch-base videos - delivered weekly to your email inbox."

By my rough reckoning, if they got 1,000 ME sufferers signed up, that'd be more than a quarter million quid a year for access to a collection of videos and audios and a weekly, seemingly pre-recorded "coaching session". Almost as nice a gig as Mrs Sowester's magic beans (which she stole from me, let's not forget)

 

A make-up salesperson 'educating' the medical community. About what, I wonder? How to apply eye shadow so that it looks good under the harsh lights in the operating room?

 

I think she has recently shown quite a lot of improvement. I wouldn't want to speak for this individual person though, don't know her reasons. @Esther12 's explanation makes a lot of sense to me.

I sometimes wonder if places like OHC and TCE have an unofficial policy of spotting people who they think might give good testimonials and providing them with extra support. If someone is showing some improvement (for whatever reason) and then receives lots of attention, special care and what feels like friendship, they are likely to feel indebted and want to offer something back in the form of a glowing testimonial... even if not fully recovered. Just a suspicion I have, no evidence.

Considering how many people they see it's surprising how few testimonials they do have - if it worked you'd expect a lot more. Yet their business model rests on these as they are such a persuasive tool for getting desperate people to part with money. I reckon they pull out all of the stops to persuade people to give their success stories.

Another strategy I think they might use is to suggest that telling your recovery story is a way of 'integrating your recovery' (i.e. it will help you to get better).

And a final suspicion I have about the OHC particularly is that people who may be good for PR get better support eg. they might see Alex rather than another practitioner giving them a sense of being privileged and special and having received such caring support that they feel swept along with the positivity and indebted. I got this feeling a while ago when there was that famous harpist who saw them and then was on the BBC talking about it. She'd had much better service than I got... because she had a public profile I wonder??

@FreeSarah Yep! To everything you said. It makes me really angry. Also, there is no measure of the harm that may have been caused by people who have signed up, read the whole psychology explanation and so decided to ignore symptoms and force themselves to over do it with disastrous consequences. It's really dangerous.

 

It's very frustrating when people who aren't in remission are promoted with great testimonials. It's common with a lot of "treatments" that are pushed these days (whether it is supplements, off-label drugs or talking therapies).

 

Hi, Clare here from Action for M.E. I'm sorry about the time it's taking me to respond to questions on the forum - I have had to focus on other things here in the office, but I hope to dedicate some time today and next week to addressing issues raised.

We declined an invitation to be involved in this conference, and have not been involved in organising it at all, other than to suggest Paul Davey as a speaker, given his considerable experience in employment support for people with M.E. and other long-term conditions. I think the involvement of the Chrysalis Effect is a serious miscalculation, given that those involved appear to have no medical qualifications at all, and this conference is aimed at medical professionals. The programme also lacks patient involvement - having a professional lead the session on "Patient voice" feels like a huge missed opportunity.

SEE M.E. was funded by National Lottery through the Big Lottery Fund, the Henry Smith Charity, Lloyds Bank Foundation, Rayne Foundation, Denman Charitable Trust and Dame Violet Wills Trust. We do not receive funding from the DWP for any of our work at all. Any funding we receive from Government bodies (currently a small grant from the Scottish Government for work that finished in April, plus we have a partnership withe CMO office there to fund one of our PhD studentships) is set out in our annual report and accounts. The report for our financial year 2017 to 2018 will be available in the autumn.

The purpose of the SEE M.E. project was to support patients who expressed needs around employment, whether that was staying in work, returning to work, or leaving work well. We involved external evaluators from the beginning, who measured the impact of the project, collecting quantitative and qualitative data from clients, employers, trade unions, clinicians and other partners, before, during and after the project.

I'd be happy to answer any questions you have about the outcomes of the project. For example, we know that 72% of SEE M.E. clients achieved the employment goals they had set for themselves, including achieving their best possible exit from unsustainable employment, achieving more sustainable existing employment, successfully returning to their job after lengthy sickness absence, starting a new job, and starting volunteering or a training course.

 

Thanks @Trish.


Our rationale for recommending Paul was that, given the event was confirmed and going ahead, it would benefit those attending to hear from someone who can offer appropriate and useful advice re supporting people with M.E. who have needs around employment, eg. understand M.E. and its impact, work with your client's personal experience, support them support them to identify and pursue achievable goals, with a realistic, longer term approach.

I do take your point that, in doing so, we give the conference agenda a degree of legitimacy, though Chrysalis Effect were added after we recommended Paul. I will get in touch with the organisers to make them aware of our concerns, and would be happy to share S4ME views about the Optimum Health Clinic, if users are happy to set them out here.

 

Thanks. I've contacted them about OHC and TCE too, as they're right down the road from me.