IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

@Trish
Home adaptations and aids for disabled people
Occupational therapy is provided for people who have a disability which affects their normal daily living activities such as dressing, washing, bathing, getting on and off the toilet, getting in and out of the bath, and preparing and cooking a meal. It also includes issues such as access to employment, education, housing and leisure opportunities.

Community occupational therapy can help you if:

  • you are a permanent resident of Tower Hamlets
  • you have a medical condition or physical disability that makes every day tasks difficult to do
What we do
Assessment
If you feel we may be able to help you we would initially complete an assessment of your needs, either via the phone or by visiting you at home.

Advice
The occupational therapist may be able to give you advice or information on more suitable housing, put you in touch with other services, or assist carers to maintain their caring role.

Modifying the tasks you do
We may suggest a new way of carrying out certain tasks to make life easier for you, or provide rehabilitation to improve your ability to do a task.

Adapting your home
This may include improving safety by installing stair and grab rails, improving access to your home by using ramps, widening doors, installing a stair-lift, or other options such as adapting your kitchen or bathroom. The responsibility for providing these adaptations may depend on who owns your property. We can advise you about this if adaptations are needed.

Provide equipment
If you have been assessed as being eligible for our service you may receive equipment. This could include small items such as long handled combs and sponges, specialised cutlery or kettle tippers, to large items such as raised toilet seats, bath lifts and hoists.

Everyone is different, so the services offered to each person will be designed to meet their individual needs.
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I know you don't live in Tower Hamlets @Trish .

Just an example of what can be done.

EDIT:1) crossposted with above. Who knows what is provided or done? Especially for ME. 2) if it were me, I might enquire.
 
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Trish said:
Thank you, @Jonathan Edwards, that means more than you can have imagined when you wrote it! (I'm having a feeling vulnerable day).
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Invisible Woman said:
I know of one case where someone had the local authority come into their home and remove all the aids that she had previously been assessed as needing. Why? They were suddenly advised that the use of aids was not advised for people with ME. By providing aids they were contributing to her illness.

ETA - this happened in the last year or so . Fairly recent.
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We turned up to s paediatric appointment in a wheelchair and this was noted.

At the previous appointment we could not get parked anywhere close to the entrance and my daughter had " palpitations" that evening - she thought she was having a heart attack. As my aunt had experienced this on several occasions and no cardiac issues found, i could calm her down. Hence the use of wheelchair ( loaned frm red cross) for the next visit. I explained what had happened, slightly confused look for a response.

For our sign off visit we did not use aids and got a smile. Duly noted in the follow up letter that a wheelchsir was not used.
Felt very much like a ticky box parameter.
 
Adrian said:
I think some of the doctors pushing Oxford would deny the neurological signs are neurological because the patient has CFS. Hence they could be included?
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I think its more observable that they claim the tested treatments work on all criterias of ME to maximize bums on seats in their clinics by using "evidence based treatments" from their poorly designed trials.

When a stage hypnotist or a psychic medium recruits from an audience is he going to bring people on the stage who have seen the bullshit already?
 
Valentijn said:
Even pacing doesn't result in a cure, recovery, or improvement of the disease itself - it just reduces exacerbations of symptoms, some of which may have been constant.
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Agreed, it's about evening out energy usage to avoid/minimise the deep troughs, which crucially includes look-ahead perception to slow down/stop before it's too late, given the inevitable delay between cause and effect.
 
Jonathan Edwards said:
But it looks as if nobody responded!
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There is a bit of discussion now.

One personk thinks that PACE results are hard to ignore, that CBT over Skype could be the norm for future studies, and that there should be a CBT/GET trial for severely affected (he has not heard of FINE apparently).

The other person thinks most of the PACE criticism doesn't make sense.

Please do not disturb the PACE apologists in their natural habitat, they are a rare breed and easily startled.
 
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strategist said:
There is a bit of discussion now.
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Isn't that just robots tracking me on line?

strategist said:
One personk thinks that PACE results are hard to ignore, that CBT over Skype could be the norm for future studies, and that there should be a CBT/GET trial for severely affected (he has not heard of FINE apparently).
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Too right that the results are hard to ignore.
Even I find Skype exhausting.
But Skype with a furry robot would be OK because you could just mess about.

strategist said:
The other person thinks most of the PACE criticism doesn't make sense.
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Indeed, David and I often don't make sense. When David is round I get wrist ache from using the corkscrew*. But it's thirsty work this PACE stuff.

*Note that this is actually a libellous untruth. Purely poetic license to embellish the narrative. Something that David never does, surprisingly for a journalist.

And anyway In vino veritas.
 
and that there should be a CBT/GET trial for severely affected (he has not heard of FINE apparently).
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FINE was for those unable to get to an ME centre, which also included those who were not severe but who did not have a local ME centre, or were unable to travel. Our "local" centre, for example, would be OK for someone with moderate symptoms to get to if someone drove them there, but even a mildly affected one would find it a challenge to get there, do the course, and get back using public transport.

Looking at the Fatigue scores, they weren't all that much worse than the PACE set: there were many at 11 bimodal (worst score) but not at 33 when the severity scaling was brought in. Is that a reflection of the limits of the fatigue scale or a reflection of their failure to entice more severely affected patients to take part?

We haven't dissected FINE because the results were not pushing for CBT/GET, and the trial was largely disregarded.
 
Amw66 said:
Ah - but there is always MUPS and a plethora of other conditions for which CBT is being positioned as a treatment. No doubt an exercise arm can be added...
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And who knows? Maybe they'll stop diagnosing CFS and instead diagnose MUPS/BDD/somatoform disorder? Nobody forbids them to do so. And maybe the reason why they diagnosed CFS (or "chronic fatigue") at all was because they could say it's psychological and prescribe CBT/GET. Maybe they don't care about the name...only about the fact that they can say it's psychological.
 
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