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I had CBT at a NHS chronic fatigue clinic but it was not proper CBT. I have had experience of CBT ( nothing to do with ME) where challenging beliefs was an essential part of the process but the CBT at the CFS clinic was not like this at all. I would describe it as a sort of mix between...

If GET and CBT are to be abolished for pwme, as they should, it will still require significant reorganisation as an interim measure. It may just be simpler for Nice not to remove them. Arguments about them being "nuanced and crafted to give power and choice to patients" are such rubbish that...

Do we have any figures for how many OTs, physios, specialist nurses and psychotherapists are employed in the current NHS chronic fatigue clinics? It seems to me that withdrawing CBT and GET as is necessary, and using those resources for useful services for ME, would require an major interim...

@Barry My comment was meant as a light joke at a time when subsets were spinning round my head after discussion of the ME and CFS nomenclature. Sorry if it caused you difficulties.

@Trish You've added in another subset. We need criteria. Not sure you can just choose.

@Barry You've got me worried. While we're thinking of subsets, are all women "ladies"? So who gets to critique this? No wonder I don't sleep.

There are links to two further letters, the reply from Mark Baker, and counter reply from IiME, on the front of the letter in the previous post.

Thanks @Andy Have just been checking the charities' fb pages re the NICE meeting. AfME statement is as above: there wasn't one on MEA page. CS must be there?? Wonder if there is a second rep I know Invest in ME have written to Mark Baker at Nice. I don't know if they are attending. Anyone...

@Andy-do you know if AfME is sending a patient rep to the meeting, or is Clare Ogden the only representative? I think stakeholders were allowed 2 places but they only name Clare. I filled in a note from a NICE form to ask for names of MEA reps and the other place but no response. Anyone know? I...

I am not quite sure about posting this, firstly because I don't have the understanding or language to explain it, but I can post a link https://www.rccxandillness.com/ I came across it when diagnosed with hypermobility ( EhlersDanloss), possible Dercums ( not sure). I already have ME ( 10...

What a magnificent donation! Well done @Cheesus, and all who played a part.

Me too. Thanks@Joh

P If anyone is inclined to try this I would suggest they look at the fb HR monitoring site. There is so much information there. Just don't give up at the first view. Sometimes it could seem as if a lot of knowledge is assumed. Just ask your questions. https://www.facebook.com/groups/ME.CFS.HRM/

Great news @Robert 1973 . Hope to hear from you again.

There is another ME society in Sussex ReMEmber who have a meeting due in May. Speakers include Dr Amolak Bansal. Their organisers( Janice and Bill Kent) are part of the Parliamentary group of which CS and the Countess of Mar are members. They are not in line with Colin Barton. I am not...

@Robert 1973 Thank you for starting a thread about your music. I hope you don't feel swept away. You obviously touched a poignant nerve. We look forward to hearing more from you.

@Wonko i have only just seen this thread, and I send my best wishes for a satisfactory resolution. I feel very emotional that sick people have to go through such damnable hoops to access what is theirs. I hope the advice others have given you brings you success in your endeavours without a...

@MErmaid Yes, the name was right. I listened to the millions missing song. I still can't remember the other name either.

Thank you @MErmaid for Laura Vitale's name. And thank you for the music @Robert 1973: strange how these onions get everywhere.

Thank you for posting these @Joh. I hadn't heard either of them before. Music hits the spot.