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The person named to have the overview and to be responsible for monitoring healthcare could be the patient's GP, especially if there isn't a social worker involved or if there is no specialist ME/CFS service in the area.

I agree. But specifying and describing PEM as well as stating that POTs, orthostatic intolerance, cognitive dysfunction and sensory sensitivities can all be severe in patients, would help get across to GPs that ME patients aren't exaggerating their symptoms. It should also be stated that...

Well, I want specific recommendations such as an electric wheelchair, but I also want a personalised care plan. Care plans are drawn up from a person centred perspective, with the involvement of the patient. Of course I don't want a care plan that has been written without involving me. I am...

But in the absence of any real evidence-based treatments, isn't the most clinically useful thing for what patients say and describe to actually to be believed? For example, my GP will only write things on my medical notes like, 'she says she falls over', 'she says she has tremors' (even when...

Isn't the purpose of this 'evidence collecting' from patients about demonstrating the need for care and support (and how this is currently not being met), rather than informing 'evidenced based treatment'? Surely, what ME patients desperately need in the updated guidelines (for both adults and...

'Technically' there will be 'monitoring of outcomes and targets', but these have been very cleverly devised to give the appearance of 'over 50% recovery' in keeping with the standard IAPT agenda for anxiety and depression (as have been discussed on other threads). With regard to 'CFS/ME' the...

It (IAPT LTC and IAPT MUS) is being imposed on every Clinical Commissioning Group across England (by NHS England) - even though many are in financial crisis. I wonder if this is a contributing factor to why journal editors and Cochrane are trying so hard to avoid retracting the relavant trials...

Did you not spot the names 'Chalder' and 'White' on the member and special advisor list?

The Accessible Information Standard applies to every person who has a communication problem due to either a disability or a health condition. It is not just for people with visual impairments and/or hearing loss. I've been meaning to start a thread specifically on it, but haven't found the...

I agree. Even if I did not have M.E., due to my autism I would not be able to participate in any consultations or research that used only phone and/or skype or a verbal interview (i.e. that required speaking verbally). Is it acceptable to exclude adults or children from any NHS research and...

I recommend reading: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482658/pdf/10.1177_2055102919838907.pdf as an antedote to the trauma!

I knew I remembered reading more about the planned referral and step up process for IAPT MUS (including CFS/ME). I have found the PDF on my laptop. The link to it is here...

You've asked for people to share their personal experiences in the public part of the forum. You may want to get this thread moved to the members only area.

Use the Benefits and Work guides, as others have said. They give you advice on every question and descriptor for both the UC50/ESA50 and for the PIP forms. They are written by lawyers specialising in the area of UK benefits. Worth much more than every penny! Edit: They also offer advice and...

To save this thread getting too broad, I have started a thread for discussing IAPT MUS CBT further here: https://www.s4me.info/threads/discussions-around-iapt-ltc-and-mus-relevant-to-nice.11220/

I've started this thread for discussions regarding the methodological issues and efficacy of the IAPT treatment model. In particular the move to treat 'CFS/ME' as a MUS that can be referred for IAPT CBT/GET treatment is now highly relevant to the ME/CFS NICE guideline.

I think in regards to MUS they are intending for patients to see the 'High Intensity CBT therapists'. At least, the training manuals are directed at the more highly trained therapists and are currently being offered as 'top-up' training. I've seen the manual uploaded somewhere on this site...

I looked into this many years ago when I wanted counselling via my GP's surgery. I had to battle to get that via IAPT and was shocked at what was happening in the mental health services. I'll see if I can find the evidence I used on my old computer (cost of IAPT was even higher earlier on), but...

I remember reading in relation to IAPT CBT that the NHS estimates the overall costs to be £100 per individual session to the CCGs, which is actually much higher than the cost would have been when the CBT therapist (or person centred counsellor) was employed directly by the GP surgery. However...

Looks like they are focusing on unevidenced biomedical treatments, not psychotherapy, physiotherapy, rehabilitative treatments or 'alternative medicine'.