Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

LOL at 'it just is'.

What a perfect response to scepticism.

 

Oooo, I've got this one.

Cruella de Ville

 

How do these idiots get anyone to take them seriously? How does the NHS appoint Hilly Raphael Quigley as the clinical lead of Oxfordshire CFS services, despite that she has no apparent qualifications, beyond taking a transdisciplinary "Social Sculpture" course where artistic bullshit gets inflicted upon scientific topics? It's just absurd.

 

I take it that that is a compliment about their being so compliant with official policy.

 

With respect I think you are missing my point. I think Valentijn's post #36 indicates what I meant.
I have lots of girlie scientist friends - of course. Jo Cambridge has a pink spectacle case and a purple hair brush on her desk and loves riding ponies. But you will never find her writing like this. This is a deliberate attempt to curry favour with a self-defined girlie-science culture of 'qualitative research' that emerged in the late 1980s. The assumption is that the supervisors and thesis examiners will lap it up. And not all girlie-science advocates are female, I agree. There are some strange male hangers on. Girlie-science is an insult both to women and to girlie people of both sexes, but it is not of my making - it is of their making. Girlieness, just like machismo, may be admirable in personal life but the business of science and the Houses of Parliament can do without them respectively.

 

Fair comment, @Trish, but there is no doubt that, as Valentijn said, there is an implicit aspect of 'girl power' in all this. There certainly was when I was research advisor to our physiotherapists in the 1980s. It became clear that my resistance to vacuous qualitative research was seen as male chauvinist.

I also think there is a difference between the pernicious attitude of mind that you mention, which is shared by a number of well known male psychiatrists and this particular style of 'science'-writing. Peter White and Michael Sharpe do not write like this. My comment was about the writing style, not the techniques being described.

 

When I read @Jonathan Edwards' "girlie sytle" post I 'painted' a short video in my mind. I really had to laugh. Plus the unicorn, and then a pink one.
Because, when I read that leaflet, especially those narcisstic 'poems', and the poster and saw those pictures, I felt like "what a togetherness, how wonderrrrful", yuk! Please, nothing against togetherness and real friendship - but this setting is...well...it's not for me.

I am sure this comparison was not meant in a sexistic manner. I told myself: "Let's first assume the good, I am sure it's not meant like that - but YOU interpret it that way. It actually is really funny and describes exactly what you thought."

I didn't know it's an insider...

At least I will link RyL with running girls in nightgowns and pink unicorns, and it's always a good laugh. Thanks for that

(By the way, sometimes "girlieness" is a fine thing, like being childish.)

 

They try even harder and get even sicker. Atleast that's what happened in my case. When finally discovering this sort of treatment is a load of bollocks and I shouldn't be blaming myself for not getting better it was as if a huge weight was lifted from my shoulders.

 

Hilly is no longer with the Oxfordshire ME service.

I did have occasion to meet her when my daughter was referred to the service several years ago. After a long wait hilly came for a home visit. In it she said something to the effect that if E would increase activity in one area this would increase overall energy in other areas. I was astonished, and pretty experienced by then, so I followed up this statement with a query by letter asking for the research to support this statement. She never responded.

The visit was long and unhelpful and daughter was meant to come up with targets to work on and they would then talk by phone, which daughter was not comfortable with. In the end we bowed out as it was clear this was not going to work for any sort of support.

 

The last GP with special interest has retired and they will not be replacing her as it was only a one day per week post so not cost effective. We in Oxfordshire ME Group for Action (OMEGA without the hyphen) are in conversation with the service but don’t have much say as to how it is run. One of the therapists is reported to be quite helpful, but waiting times are currently about 20 weeks.

PK, current OMEGA chair

 

@Trish I think I would try to open up conversation with the lead researcher.... if there is a way to make this a positive experience for you and for her, it perhaps has the best chance of effecting change for the better... good luck!

 

Did they interpret it as you asking for recordings of interview with patients, etc, or just the outcome data? What info did you want to request?

 

I remember her. She sat at my table at the first CMRC conference three years ago. She waffled endlessly about this feasibility study and I couldn't make head nor tail what she was talking about, except that it involved visiting severe patients at home. God help them, I thought.

Have a look at page 4 of this document. Did you know about the NLP?

The intention was to recruit 20 patients but I see from your link that they only managed to get 12.

 

Colonialism - the policy or practice of acquiring full or partial political control over another country, occupying it with settlers, and exploiting it economically.

Since first falling into this rabbit hole I have felt like the native being lectured to by the district officer, someone from another world who can return there whenever they want. No attempt at understanding, Good Lord no, can't risk going native.

It now feels as if the adults have left the room and, in the UK at least, ME has become the sandpit for the children.

 

I can't find any published results

 

@Sbag it's on pages 2 and 3 of the link @Trish gave. It barely qualifies as results, though. More of a sketch.