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

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.
 
soti said:
This is an entirely inappropriate comment. It insinuates that girlieness is shameful and insulting, and furthermore associates it with non-seriousness and bad methodology. Neither of these insinuations has any basis in reality.

Many scientists are girlie. Yes, it's possible to be girlie AND to use controlled methodology to reduce risk of bias. And amazingly, girlie scientists are just as smart as non-girlie scientists. Perhaps if we had more such scientists, we would see fewer stereotypically feminine images being used inappropriately to shame bad methodology.

Come on Jonathan, the methodology is shameful enough on its own. Argue on the merits, not "ad feminam". There's no place for that here.
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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.
 
Jonathan Edwards said:
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.
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I must admit I was a bit uncomfortable with your use of the word 'girlie' in this context. The problem is not your intention, or the substance of your comment about silly nonsense being promoted as serious treatments. I'm sure we all agree there is no place for such unscientific drivel in the treatment of any illness, physical or mental.

My problem is that, even if you don't intend it, the word 'girly' to describe such drivel has a gender specific origin and commonly accepted meaning. And the fact that you say you intended it to include men who espouse this drivel doesn't really help, as it could, in common parlance, be taken to mean effeminate which may also cause offence to some.

How about using a non gender-specific word such as 'drippy' or 'airy fairy' instead of 'girly'. It might be more accurate, since, as you say, many of us serious scientific types also have some 'girly' traits or tastes.

Actually I think it's far more sinister than being merely 'girly' or 'silly' or 'drippy' or 'airy fairy'. I think it is a dangerous process of mind control being inflicted on unwitting sick people under the guise of loving kindness by people with no understanding of either the nature of the illness or the possible serious negative psychological and physical effects of what they are doing.
 
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.)
 
Trish said:
That's one thing that really struck me too. I got the feeling from reading the document that she was having a terrific time being wonderful and creative.

My heart goes out to any severely ill ME sufferers who stray into their playground to have their heads messed with in their game of 'you can play with me so long as you pretend you're recovering'.

What happens to the patients afterwards when the warm glow wears off and they realise they are just as sick as when they started, and the guilt comes crashing in as they think they failed because they didn't try hard enough.
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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.
 
I mentioned this study earlier in this thread.

Trish said:
BMC Complementary and Alternative Medicine 2017, 17(Suppl 1):317
http://insight.cumbria.ac.uk/id/eprint/3074/1/Cox_FeasibilityStudy.pdf

P119 Feasibility study for a community based intervention for adults with severe Chronic Fatigue Syndrome/ ME
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A quick reminder of the outcome:

Trish said:
Results
The study recruited and engaged twelve participants with no serious adverse events or dropouts.

At end of intervention, 5/12 participants had improved in fatigue, physical function.

Group mean scores improved overall for fatigue (Chalder fatigue scale), physical function (activity and physical function scale) and anxiety.

Qualitative interviews suggested that the intervention was acceptable to patients, whilst also highlighting suggestions for improvement.

Participants will be followed up for a further year to find out if improvements are sustained.

Conclusion
This is the largest study ever conducted in severe CFS/ME and shows significant recovery suggesting further studies are indicated. Treatment is uniquely based on a patient inspired intervention.
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Trish said:
I contacted the University of Cumbia data holder to try to get the data from this study,
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Since I hadn't heard for quite a while, I assumed nothing would happen.

Today I have just received from the University of Southampton FOI officer an e-mail turning down my request for the data on the grounds that it cannot be suitably anonymised so individuals can't be identified.

They have treated it as a FOI request, and give me details of what to do to appeal.

My question is, shall I pursue it further?

They do say Claire McDermott, the lead researcher is willing to communicate further with me.

I have two reasons to pursue this - first, it's happening in my area, and presumably this is the only thing my local service can now offer me if I need specialist help, which appals me. Second, from the other information in this thread, it appears their ideas are being used as the basis for higher degrees, and presumably will give the practitioners and those who employ them apparent legitimacy for their methods.

Suggestions please.
 
Sbag said:
I think it is related to this group which is part of the Oxfordshire NHS ME service - https://www.oxfordhealth.nhs.uk/service_description/oxfordshire-chronic-fatigue-syndrome-me-service/
I think I came across the paper when I was looking up the name of the author in relation to something else and she came up in relation to this "service". There is a poster on that site (https://www.oxfordhealth.nhs.uk/wp-content/uploads/2014/01/RYL-poster-Feb-15.pdf) so not sure if that is the same one that was used for CMRC
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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.
 
Sbag said:
I've heard bad things from others about the Oxfordshire NHS ME service.

I wanted to find out who the GP is that runs the clinic, if you know anyone that went there could you ask?
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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
 
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Trish said:
They do say Claire McDermott, the lead researcher is willing to communicate further with me.
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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.

Intervention :
Recovery strategies based on the Neuro-Linguistic Programming concept of ‘modelling success’, adapted for use in severe CFS/ME through in-depth Patient and Public Involvement development work conducted over two years. The intervention includes a range of NLP techniques, delivered through audio-recordings, direct therapist contact and social contact via peer recovery support group.

One year active intervention + one year support and follow-up.

Primary measure Clinical Global Impression of Change

Secondary outcome measures include
- Electronic activity and sleep measurement
- Patient reported outcome measures on fatigue, pain, physical function, anxiety, depression, self-efficacy and quality of life. - Therapist completed outcome measures on physical function.
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ladycatlover said:
Or you can have the best of both worlds... A unicorn pony with wings! :rofl:

images
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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.
 
Scarecrow said:
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.
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I can't find any published results
 
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