Good Practice

[ringading]

More details than NICE guidelines without mention of pacing. What do we all think of this ?

meassociation.org.uk/wp-con...

Advice on medications helps - keeping CBT & GET does not in my opinion

[bulletheblue]

32 pages ! more time before any comment or judgement .

[Effort in reply to bulletheblue]

Same response trying to stay focused bulletheblue

[ringading in reply to bulletheblue]

Anytime its information not an examination with a certificate for passing.

[bulletheblue in reply to ringading]

Education without an exam how can anyone not like this.

[Seascape]

Fixing patients so that NICE guide can be used is my first impression although doing them a disservice with my overtaxed thinking is also quite probable.

[readerlist in reply to Seascape]

Once a diagnosis has been made, patients should be considered for further evaluation to see if they would benefit from the evidence based treatments (CBT – cognitive behaviour therapy and GET – graded exercise therapy). Where these specialist services are not available, rehabilitation using those principles (as described later in this guide).

Using those principles without employing a specialist trained therapist

contravenes guideline:

1.6.2.11 GET should be delivered only by a suitably trained GET therapist with experience in CFS/ME, under appropriate clinical supervision.

nice.org.uk/guidance/cg53/c...

Considered for further evaluation includes patients agreement with the evidence based treatments which singularly amongst treatments proposed lack consideration of harms:

ahmf.org/Fall2011-Kindlon-H...

[budgiefriend in reply to readerlist]

It winds me up every time I read those words, "evidence based treatments" They are so NOT evidence based. Far too much evidence to the contrary that they harm patients and do not help them.

If patients in their study were helped, as they claim, most likely they were the ones who did not have ME, but another condition, as the criteria for selection of subjects those studies is very flawed and loose, not based on good selection methods to distinguish ME from a larger group of people with 'chronic fatigue' (note: NOT CFS, but CF).

Forgive me if you all know this already. I often can't tell who is relaying info we all know and who is asking about it and new to the discussion, not yet informed.

[Seascape in reply to budgiefriend]

Overtaxed thinking agreed with

[ringading in reply to Seascape]

Leopards do not change their spots a modernising of NICE guidelines

[Ian123]

Agreed explaining use and types of drug treatment will assist non specialist medical support. The adherence to NICE guidelines stems from the specialist centres that were established for the administration of the perceived best treatment option which co incidentally is the cheapest option, as excluding the care of those above moderate restricts access and allows claims of some effectiveness not evident in the more severely affected.

[ringading in reply to Ian123]

Drawn up with AYME and children are conspicuous in their absence from the treatment variations.

[Effort]

Within guidelines a human element of operating the principles has effect on function.

The Department of Health believes in ME/CFS when the NHS duty of providing service do not - test of guidelines are how staff operate them.

[ringading in reply to Effort]

True time will tell

[budgiefriend]

Agree with you completely, Ringading.

[ringading in reply to budgiefriend]

Thank you for the support.

[Dunnlyn]

Quoting

Aim

This guide was developed through the British Association of CFS/ME (BACME), an

organisation that represents health professionals working with this condition.

It aims to provide information to support clinicians in their work with CFS/ME and includes both pharmacological and rehabilitative approaches. It has been developed by a group of experienced professionals both in a specially convened open workshop, held in 2014, and through circulation and consultation with the wider BACME membership, AYME (Action for Young people with ME) and service users.

Service Users last and least it seems when only professionals information is supported

as you say ringding

[ringading in reply to Dunnlyn]

Not only me thinking that then.

[slowmotion]

Hmmm practising until they get good at treating CFS/ME

[Jonesbones in reply to slowmotion]

Love the spin on good practice ha ha

[ringading in reply to slowmotion]

Raised a chuckle which is always nice.

[budgiefriend]

sigh... I know Charles Shepherd of ME Assoc. has made strong statements and articles of caution about harms associated with GET/CBT, as have many others. There is no valid evidence for any claim of benefit from these and lots of evidence (studies into exertion intolerance and biomedical evidence of ongoing illness that will worsen without proper treatment, current studies on severely affected patients should also make a good contribution to all this. Countess of Mar I believe also spoke out on this in House of Lords.

Seems I read somewhere that even Wesselly himself backed down on the subject of GET fairly recently, but that might be a figment of my wishful imagination.

I read loads and it all mushes together into a big soup.

[ringading in reply to budgiefriend]

Trudie Chalder is Professor of Cognitive Behavioural Psychotherapy at the Department of Psychological Medicine at King's College London and one of Simon Wessely's disciples has not backed down.

This year "fear avoidance beliefs" introduced in GET revival news-medical.net/news/20150...

[nedd]

We had an Eeyore moment!

youtube.com/watch?v=CQI0E1W...(Not working as expected?)

28 Mar 2014 - Uploaded by Michael Mayes

[ringading in reply to nedd]

Things not getting better or getting worse same as Eeyore friends matter.

[nedd in reply to ringading]

Such a wordy document always sends me to my gloomy place. With low expectations in the manner of Eeyore.

ie I wouldn't spot any nuggets within.

You nailed it. Not getting worse not getting better.

[ringading in reply to nedd]

A gloomy place terrifies me like looking from a high building into the darkness that can take away who I am. Pacing gets left behind escaping my fear although raging against injustice from days demonstrating are a lifetime away some other being banning the bomb.

[nedd in reply to ringading]

Even a small light brightens a dark corner. It's just sometimes our blinks don't coincide with the flames flicker so all seems dark.

I am intrigued by the reference to banning the bomb? Took me right back to another life that.

[ringading in reply to nedd]

A small light in the window guiding us home through mist and gloom a welcome sight.

Young students back in another life demonstrating against the powers that be yet still Trident will be renewed and nothing change in a lifetime.

[budgiefriend]

Thanks for the Trudie Chalder article link. I would have predicted that she wouldn't. Having watched a couple of her videos which were truly disgusting. Her attitude toward ME patients is despicable.

We just need to move beyond these people and try to keep an eye on them without obsessing about the harm they are doing. We have lots of new research and efforts going on to get better treatment. The more we try to avoid the cranks and the hateful trolls, the more energy we will have for building community and finding the rare bits of help and support.

It is often very tempting to engage with trolls in comments and forums, but I like forums like this one where people are respectful and troll comments seem to be filtered out by moderators. We don't need more of their nastiness eroding our precious moments of time to interact with other good people.

I try my best to be realistic, and I found that making a decision to be happy inside myself and do things that make me feel happy despite my medical condition or limitations has worked much better for me. But it never made me actually improve in my medical condition. I am actually worse... just happier.

And for the record, I did not mean to say that I believed Simon Wesselly had actually changed his attitude or beliefs in any way. Only that he made some statements to the effect of back pedalling, now that there is so much more overwhelming evidence that he is totally wrong. He's trying to turn it all to his advantage by making is statements sound like that's what he meant all along. We all know different.

Never trust a liar and never believe a person's words instead of looking at their habits and their actions over a period of time. I think once a Wesselly, always a Wesselly.

[ringading in reply to budgiefriend]

At peace with yourself fills me with a warm feeling hard to put into words.

Serenity over stress each time a choice presents living with years of broken health drains a spirit be happy every opportunity.

[budgiefriend in reply to ringading]

I have had the misfortune to be around a number of people who are just plain unhappy and dissatisfied with life, yet healthy in body and with no mental illness.

Trying to reason with them and trying to ask them to behave differently toward me and in my presence so that their persistent negativity did not impact on my life so much did nothing. They were always feeling a need to create conflict, to argue every tiny point even with perfect strangers in a shop, just spreading misery around.

And seeing anything given to others as indicative of something being denied to them, or something not deserved. I remember in particular explaining that love is not a finite commodity. Love increases the more it is given and shared (not talking about any kind of flirtatious or unfaithful behaviour, but like love for a friend or a child).

This did no good. It was like they viewed everything with a tight fist, ready to grab or punch or pull whatever resources were out there. The analogy of not being able to accept love if your fist is closed in miserliness or fear of losing comes to mind. But the people I refer to could not understand this in any form.

After being accustomed to being alone I reflected that no matter what happens to my body, my heart, spirit and mind have access to an unlimited supply of peace, warmth, love, and beauty. Those things come from inside myself. It has helped a lot, and made me far less lonely and able to deal with a lot of physical pain, because I have an open heart and a strong centre.

Although being around miserable and unpleasant people undoubtedly did a lot of damage in my life, I might not have seen these truths so clearly without the stark contrast of someone who thinks that every time I say 'I love you' to someone else, it means less love for them! and all the rest.