On line ‘survey’ re UK CFS/ME specialist services

Peter T

Peter T

Senior Member (Voting Rights)
[I could not find this posted anywhere, but admins delete this if I am duplicating.]

There is a ‘survey’ on line, effectively asking people to support the retention of the current UK specialist ME provision, see

https://cfs-me-nhs.onlinesurveys.ac.uk/specialist-services

This survey appears just to have one question:

Research shows that adults and children with CFS/ME are more likely to improve with specialist treatment.

We believe that adults and children with Chronic Fatigue Syndrome or ME (CFS/ME) should have a choice and be able to access specialist NHS services if they want this.

2. Do you think that adults and children with Chronic Fatigue Syndrome or ME (CFS/ME) should have access to specialist NHS services for assessment and treatment?
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It does not seem to have clear information on who set it up or what its aims are.

Given the preamble it does not seem an unbiased questionnaire design. It is saying:
  • Specialist Services are good
  • People should be able to access them
  • Do you think people should be able to access them?
Having already prejudged the issue the one question hardly allows a nuanced response. This is neither a questionnaire or a survey, it is a petition in disguise.

I wonder if it is helpful or harmful to complete it. There is space to add a comment to the one yes/no answer allowing you to possibly qualify your response.
 
It is disappointing that the bulk of UK specialist services are not really specialist assessment, management or advice resources, but rather vehicles for promoting GET and the unhelpful PACE variant on CBT.

However, there should be a role for meaningful specialist ME provision, that brings together expertise and knowledge to support people with ME. And certainly their likely replacement by generic MUS services can only be a harmful backwards step.

To varying degrees the specialist services in the UK do offer some practical support, certainly my referral to one, some years ago now, did help in some ways, and was my first structured contact with other people with ME. On patient forums a number of people seem to find their referrals helpful. So although research does not indicate they have any success at treating ME, and generally they advocate potentially harmful treatments, would we want to see them disbanded rather than reformed?
 
For questions relating to this survey, please contact Hazel O'Dowd (servicesurvey@nbt.nhs.uk)
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For those who don't know she is listed as one of the authors of the PACE trial, https://me-pedia.org/wiki/Hazel_O'Dowd

My interpretation of this petition is that it will be presented as support for the current methods employed by the specialist services if it achieves a positive note. My intention is to fill it in with a negative response but to then qualify it by saying that my answer is based on their current methods, and that if they used treatments that were appropriate for ME then I would be in favour.

Edit: Edit edited: As indicated further down thread, O'Dowd's name was thought to have been removed but it now turns out that contact details are given in two places, O'Dowd's name can still be seen here, https://cfs-me-nhs.onlinesurveys.ac.uk/specialist-services/contact
 
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Before I knew anything of this illness, and the politics engulfing it, I was annoyed that there were no specialists anywhere near us.

Now i realise that we are in a better place than many others. ( and the current place is not too good) . I now have knowledge and my daughter understands her energy envelope bounds. The sad thing is that most of those providing medical input do not have the slightest scooby , and that is what is disturbing about the thread subject.

That said, the support of other pwME via interaction would have been positive.
 
Damn, I just started filling it in with an explanation that I don't support CBT/GET based services, and it said I'd completed when I was half way through writing my comment, and you can't alter your comment.
It seems to be an NHS based survey - it says the data will be stored by the NHS.
I would discourage people from doing what I did, which was to fill in yes, then add a qualifying comment (which got chopped when I hadn't finished). I should have voted no, then added my reason.
 
Trish said:
Damn, I just started filling it in with an explanation that I don't support CBT/GET based services, and it said I'd completed when I was half way through writing my comment, and you can't alter your comment.
It seems to be an NHS based survey - it says the data will be stored by the NHS.
I would discourage people from doing what I did, which was to fill in yes, then add a qualifying comment (which got chopped when I hadn't finished). I should have voted no, then added my reason.
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Yeah, personally I don't think a yes answer is a good one for us on this petition, even if it is qualified. My assumption would be that the nuances of any qualified yes vote would be ignored.
 
Trish said:
Damn, I just started filling it in with an explanation that I don't support CBT/GET based services, and it said I'd completed when I was half way through writing my comment, and you can't alter your comment.
It seems to be an NHS based survey - it says the data will be stored by the NHS.
I would discourage people from doing what I did, which was to fill in yes, then add a qualifying comment (which got chopped when I hadn't finished). I should have voted no, then added my reason.
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I put no and explained why the specialist services have no value as there are no treatments but the services push them despite the lack of evidence.
 
Another thought I had on this. It could also be a desperate attempt to stop the current CFS/ME services being absorbed by the all-consuming IAPT services. If that is it's aim then I think it's too late anyway, and given that, hopefully, NICE will come to the realisation in this current review of its guidelines that there is no good evidence for GET/CBT for ME, then the basis for these services existing will disappear anyhow.
 
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Yes @Andy thats already happened in my area. You can’t blame the NHS for getting rid of these clinics when there’s no evidence they’re effective and when you go beneath the veneer of the specialist name what they’ providing is only based on a manual that anyone doing CBT or physio could work to.
 
Trish said:
Damn, I just started filling it in with an explanation that I don't support CBT/GET based services, and it said I'd completed when I was half way through writing my comment, and you can't alter your comment.
It seems to be an NHS based survey - it says the data will be stored by the NHS.
I would discourage people from doing what I did, which was to fill in yes, then add a qualifying comment (which got chopped when I hadn't finished). I should have voted no, then added my reason.
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I started filling it in as you did with a yes and then a comment, and seemed then to lose my comment so I did not submit it, but posted this thread instead to give me time to think.

I also suggest people draft their comment else where and try cutting and pasting it into the survey later.
 
Andy said:
For those who don't know she is listed as one of the authors of the PACE trial, https://me-pedia.org/wiki/Hazel_O'Dowd
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also works a lot with AfME.
The 'specialist' service in Bristol
https://www.nbt.nhs.uk/our-services...romeme-service/cfsme-rehabilitation-checklist
For CFS/ME rehabilitation, small increases, for example 10% from the baseline are commonly used. This is typically followed by a period of days or weeks before the next increase.
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6. Do you understand that you may experience a mild, acceptable increase in symptoms following your increase in exercise?
This increase in symptoms is common, but should settle after a week or two at your slightly higher level of exercise/activity. This increase in symptoms should feel acceptable to you. It is important to realise that rehabilitation is not aimed at relieving symptoms in the short term: it is aimed at making gentle progress with function. However, people that do well with rehabilitation tend to report fewer symptoms in the longer term.
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9. Do you understand that not everyone makes progress with rehabilitation?
Research suggests that people who plan to slowly increase their activities and exercise are twice as likely to make moderate improvement at the end of a year. However, approximately one third of people with CFS/ME who try to slowly build up their activity didn't manage to make significant progress2. If you are one of these people, try not to be disheartened: at least you know that you have tried to gradually build up your activities, and you have done the best you can to make progress at this stage. Your therapist should understand that not everyone makes progress with rehabilitation.
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I'm not really in a position to contribute to the survey but am interested in the info you posted @Sly Saint as I have my first 'foundation' course with the Bristol clinic next week. I discussed it with my GP this morning, saying that I'm prepared to go with an open mind but my concern is that, in the last 6mths, it's not been possible to get to a stable position from which I could build on. I have to say that, first time round the ME/CFS merry go round, I effectively employed my own regime of what could probably be termed GET (which got me to about 70% of pre-illness level after about 2.5yrs). I had no external support and tried to employ pacing but gradually pushing the boundaries when it felt possible.

However, this time I'm much more severe and I'm struggling to get a handle on it. My analogy is that my first 'bout' of ME was like having The Everly Brothers as a warm act for what is now the headline act, who I would equate to being something more like Megadeath (if we map ME severity onto a scale that correlates with thrash metal).

I'm interested in what approach the clinic will take, but will not be committing to undertaking more physical activity than I feel comfortable with.

If people are interested I can report back on how they 'spin' things after each meeting.
 
It is another one of these questions that have 2 different meanings. We all want specialist ME services but the clinics that already exist are not specialist ME centres. The people who run them have no idea what ME actually is, how it affects patients and what helps.

So we answer Yes but that will be taken to endorse the services that use CBT and GET and where you won't be seen by a doctor who understands ME. So we answer No and it looks like we don't want what every other illness wants.
 
Mithriel said:
It is another one of these questions that have 2 different meanings. We all want specialist ME services but the clinics that already exist are not specialist ME centres. The people who run them have no idea what ME actually is, how it affects patients and what helps.

So we answer Yes but that will be taken to endorse the services that use CBT and GET and where you won't be seen by a doctor who understands ME. So we answer No and it looks like we don't want what every other illness wants.
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this
 
What an apparently devious and deceitful survey – in keeping with everything we’ve come to expect from the PACE authors and their supporters. It would be interesting to know where/how it is being promoted.

I hope that the charities will bring this survey to the attention of their members and advise them how to complete it if they do not wish to endorse the NHS CFS clinics which promote GET and PACE-type CBT as effective treatments for ME. @Russell Fleming @EspeMor @Action for M.E.

Like others, I’ve answered “no” and explained that the current “specialist NHS services” which promote GET and PACE-type CBT are totally inadequate and inappropriate, and that I would like people with ME to have access to appropriate physician-led specialised NHS services instead.

I suspect this survey will only be used if it produces the desired result. I suggest that we request to see the results if they are not published.

[edit – typo]
 
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They are probably asking all their patient to fill in the survey - which will bias it towards those who have only got as far as being pleased to have a diagnosis and be apparently being taken seriously, and not the ones who have dropped out because it was useless or making them sicker.
 
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