Search results

I was thinking about this too, really since the draft guidelines were published. I think S4ME picked up on this, but I can't remember what our group submitted in relation to it in the final comments sent to NICE. I am definitely not anticipating the final NICE guidelines to deal with all the...

Yes. When I read their brochure of treatments on offer, it seems they use the word 'integrated' for 'alternative'.... Edit: Or being more generous, at the very least it's just 'therapist led' medicine.

Doesn't this mean the onus will be on GPs to make the ME/CFS diagnosis? Wasn't it quoted in the past that about 40% of those who were referred to specialist CFS (CFS/ME) clinics were misdiagnosed? That figure obviously may have changed over the years and vary from clinic to clinic, but for a...

Further info on SLAM: https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/about/index I will be particularly interested to see how Kings deal with the new NICE guidelines (which to make clear, I haven't seen the pre-publication version of, but am feeling hopeful based on the recent resignations...

Most of the NHS 'CFS/ME' services just seem to state that they 'follow NICE evidence based treatments and/or guidelines'. It seems that it is the larger London and university hospitals that go beyond this 'safe' explanation for why they provide the specific treatments they offer. I notice the...

But they have the research to back it up....:rolleyes: https://www.royalfree.nhs.uk/services/services-a-z/fatigue-service/cfs-me-research/ It will be interesting to see if any of these services update their webpages after the new NICE guidelines are published, and if so, what wording they use.

They set up the new 'Chronic Fatigue' service by merging with the existing pain clinic in 2018 apparently. But the new service does include 'Chronic Fatigue Syndrome' patients. The news article was from 2018, I quoted it to show the CFS/ME treatments are simply an add on to the pain approach...

Seems so: https://www.healthwatchhackney.co.uk/news/mental-health-trust-pulls-out-of-chronic-fatigue-service/

I really hate the term 'living well', it completely trivialises how difficult it is to suffer from a serious chronic illness. There is a big difference in managing ones ill health as best as possible to have the best quality of life you can within the confines of severe pain or severe energy...

Sounds like they've never seen a patient with actual ME/CFS... It contradicts the importance of people being given an early diagnosis and being supported to manage their 'energy envelope'. Given that people are most likely to recover in the early years, are they aiming ACT at people who have...

I am autistic as well as having the severe ME. I had had a meltdown in my first face to face, where I was forced by ATOS to attend an inappropriate venue (a public sports centre) for my assessment. That was many years ago now. I got a home assessment the second time around, although my...

I agree, it's definitely worth involving the MP. I am doing this for my friend too. I involved my MP in my last PIP prior to the face to face. I received a supporting letter from her (and she is a non-controversial Conservative who always toes the party line). Being able to show this letter in...

I am really frustrated by my ME limitations as I would love to help more people. I am currently helping someone with a complex PIP MR case. People should be aware (and it is stated in the B&W appeals guide) that you can submit the MR even after the initial month deadline (which is usually only 2...

The DWP Decision Maker (and HCP who produces the medical report) are supposed to consider ALL the evidence available to them, and seek additional medical evidence if required, so it does sound like you should succeed at MR stage with this additional evidence.

I think what you get with Fightback is legal knowledge of relevant caselaw, that is pretty difficult for a non-specialist to have easy access to.

I think Fightback are good for people who can send them all the relevant medical reports and medical evidence to work through, but less so for people who cannot manage this. They can pick up internal contradictions in an ATOS or CAPITA medical report, but if you have contradictory or poor...

Fightback4Justice offer a MR writing service, but I think they charge around £85 for it. They say they can prepare the papers fairly quickly, I presume that would be if you have the relevant information to hand to forward to them.

This is a really worrying Green Paper. If people in the UK are able I would suggest responding to the consultation, but ensure you word your responses in a way that can't be twisted (the Green Paper clearly cherry picks the quotes from the initial consultation to promote its own agenda, as well...

In England (NHS), the phrase 'severe mental illness' has a specific medical meaning, usually only given to people whose illness includes an element of psychosis. Major clinical depression alone doesn't usually get included unless it has a bipolar element or unless so severe the person has been...

Someone should suggest that the GRADE system (and any other such tools) automatically should rate any research that doesn't provide open access to its raw data, as 'very low'. Wonder how that would affect future research and future Cochrane reports....