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Great minds think alike....

Unfortunately, this is not the case in many of the clinics. Few have a medical doctor as part of the team, so any diagnosis given would be from a therapist or psychologist. Additionally, several of the previous specialist CFS/ME services have now merged with BPS orientated pain and general...

I think we (patients) should be pushing the main UK ME charities to take this issue up with BACME once the final NICE guidelines are published.

A very timely piece and worth reading as background to the recent government Green Paper on out of work and disability benefits. The below piece of DWP commissioned 'research' is particularly disturbing for PWME...

It would be a considerable saving for me as I have to pay £38 a month for the £15 36 Mb package (guaranteed to be about 27 Mb, the same as I get now as it will be via the same fibre line). EE were (and I think still are) cheaper than going direct to BT for the equivalent package (inclusive...

Presumably there is no BT fibre broadband to your flat then. In my area BT are the only company offering fibre broadband lines. When I went with EE, EE had a contract with BT to use their lines. Since then EE have been bought by BT but are still being run as a separate company with independent...

I do wonder how many people are given a diagnosis of ME/CFS who are really in the phase of a post viral fatigue syndrome, i.e. a condition that is self-limiting even it continues for 1-2 years. Many of these patients may be at the phase where they are able to increase their activity levels...

I may get my daughter to phone for me. I moved from BT years ago due to the difficulties and hours spent on the non UK customer helpline (even my very patient daughter got driven round the bend with their inability to deviate from non helpful scripts). I see now they have a UK based customer...

I tried this a few weeks ago using the online application method and I kept getting a message at the end that there was a technical error and to phone their customer services. Trying to do this on the phone is beyond my cognitive capacities (I struggle with verbal communication) so at the moment...

I think some NHS services seem to offer the option for private treatments, in the same way that private companies can offer certain treatments on the NHS, providing they charge CCGs the NHS rates. The London hospitals particularly seem to have private wings on the same sites as the main NHS...

One of the most serious problems with even those clinics that feel they are trying to be helpful to ME/CFS patients is that they don't take account of the indirect harm their 'optimistic' view of being able to help people 'recover' has. The DWP will certainly take this to mean that ME/CFS is...

I just looked up the Yorkshire Fatigue Clinic. I was shocked that they encourage patients to sign themselves and their carers up to an initial workshop - for a fee - to judge whether or not they would be happy with the approach taken. This rather smacks of the approach taken with the Lightning...

I also think this may be why we didn't see more resignations from the committee - there is still room for the CFS (now more CF orientated) clinics to continue offering CBT and 'flexible' GET. Edit: Not all of the BPS NICE committee members were heavily involved in promoting the deconditioning...

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...