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From the last few examples it seems they are picking on the even more vulnerable, eg single Mums, non English speakers for their threats. Some people have spoken privately with David Tuller and TYMES/DR Speight have helped c 200 cases. BUT parents are terrified of the consequences of speaking...

This is why the current Guidelines need to go out with a Health Warning. There are other youngsters whose parents are too scared to speak out, for fear of losing their children.

TYMES Trust have worked with nisai to provide virtual classrooms see http://www.tymestrust.org/pdfs/succeedingwithme.pdf. I was at a TYMES meeting in 2014, where they presented awards to several youngsters who had gained qualifications in this way. It included a girl from a small Channel Island...

Re the gender ratio, some of us are carers. I am, but also represent a daughter.

My 16 year-old daughter would have been distraught to be told there's no cure, when she was first diagnosed. Having a close friend of the family with ME, who has worsened significantly over the last 20 years, we were very keen to describe it as post-viral fatigue initially. I also keep up with...

@Valentijn. There was "transfer of relevant info", including that highlighted above, and other useful items. i really don't want to go into too much info on a public thread.

We also talked a great deal about harms from GET, including personal experience from some, currently there are teenagers being threatened with intense inpatient treatment if they don't get better. .

I think they are responding to patient's cognitions. To be fair, even at GOSH where we saw the Psychologist with our daughter we never felt that she was trying to alter any "false illness beliefs", but just generally more "supportive", eg Q"what issues are there?", A " people dismissing the...

Just a few comments from our table, same one as Sally Burch's. We did not spend time on dodgy science/unproven treatments but did talk about overlapping/comorbid conditions, such as POTS and EDS. I have become increasingly aware of these two, from a Mum's Facebook Group that I've joined fairly...

Absolutely, this is what we were explaining, why we were so anti the PACE/Guideline CBT. We were near her, so this was more of a private chat.

So glad I wasn't! on the table with MS. Natalie Wright was on it, next to Lady Mar and said it was going well at tea-break. Didn't really notice others. It was a pretty busy time, just concentrating on our table discussions really.

Above link includes comments on Skype etc and video conferencing. I do not know whether that is to virtually attend a meeting or to provide input in an additional way. Our table leader's last Guideline was on End of Life Care, so for that there needed to be different ways for patients/carers to...

Questions were also asked about how PwME could be involved, given that most would be unable to survive a whole day meeting, let alone contribute in a meaningful way. One idea we had in the pub was to have a back up person or a "job share" where one person could cover the morning and one the...

@Valentijn and @Trish They are very much looking for people with relevant experience, including understanding of the science amongst the patient/carer 'lay' members. They describe it as a bit like a job application where you state your reasons for why you might be a good committee member...

There was a lovely neurophysiotherapist at our table yesterday from a northern clinic. She is the "service lead"(?correct terminology, but she's in charge of service provision at their clinic). Their part-time CBT person does not do FPIBC (see above) and they'd recently done a survey where...

You obviously need more time at the Bristol NHS acronym clinic Barry! Seriously though, the fact that recommendations for CBT in NICE are based on "correcting false illness beliefs", needs to be spread widely. PwME do not have a problem with counselling or similar supportive therapies (whatever...

Probably to get a wider audience interested @Trish

This is confusing and disappointing. NICE stated today that: They have made the decision to replace the Guideline in full, ie not try and update the old one They recognise the need to start again as the current guideline does not resonate with people with ME They are increasing the number of...

Good Luck to all those who go. Hoping your voices are listened to and heard. I am sure that Tymes Trust will raise this, but it would be good to have it mentioned on several tables: Teenagers with ME are still being threatened with "intensive inpatient treatment" if they do not get better...

If only it was just their English that was wrong!