Article in Bella magazine - 'Please Believe ME' 26 Sep 2019

[Sly Saint]

write up on AfME website:

What's it like having a debilitating illness that some people don't believe exists? When it leaves you too unwell to leave the house, how do you tell your boss or your friends?

In this article, Bella magazine talks to M.E. Researcher Ron Davis, our Head of Communication and Engagement Clare Ogden and 22 year old Georgina in order to share some insight in to the widely misunderstood condition M.E./CFS.

https://www.actionforme.org.uk/news/bella-magazine-please-believe-me/

includes link to scan of article:
https://www.actionforme.org.uk/uploads/images/2019/09/bella-please-believe-me.pdf

still saying CBT is perfectly acceptable

There's also CBT. Again this doesn't imply ME is a mental health condition. The therapy is used to help people manage their symptoms.

hmm

“Some people make good progress and may recover, while others can remain ill for years,”

Clare Ogden AfME

double hmm

 

[Trish]

It could be a good article, but is let down by some of what Clare Ogden says:

Then, there’s a technique called “pacing”. This is about striking a balance between activity and rest to help you avoid an energy crash and surge in symptoms. Sometimes it’s used to help stabilise your condition, then build up your activity levels, but it doesn’t work for everyone. There’s also cognitive behavioural therapy (CBT). Again, this doesn’t imply ME is a mental health condition. The therapy is used to help people manage their symptoms. “Some people make good progress and may recover, while others can remain ill for years,”

my bolding.

Why do AfME keep misrepresenting pacing, and why do they misrepresent the CBT that is prescribed for ME? And why do they not say how few actually recover?

 

[John Mac]

There's also CBT. Again this doesn't imply ME is a mental health condition. The therapy is used to help people manage their symptoms.

But it isn't, the PACE study claimed it could cure people

 

[Sly Saint]

It could be a good article, but is let down by some of what Clare Ogden says:

my bolding.

Why do AfME keep misrepresenting pacing, and why do they misrepresent the CBT that is prescribed for ME? And why do they not say how few actually recover?

what I was pointing out in OP. however , am not sure that all of that quote you included is what Clare Ogden said.
eta: although likely that source of the info re pacing is afme

 

[Amw66]

Are Afme no longer forum members - tagging doesn't t seem to work

 

[Cinders66]

Yeah as usual AFME are the problem, not in a catestrophic way but in a kinda better if you said nothing way.

 

[duncan]

My Bella ME!
You were a child of the sun
And the sky and the deep blue sea.

Good luck getting that tune out of your head.

 

[Mithriel]

AfME have been letting down patients for years. If they want to support people with idiopathic fatigue, fine but they keep pretending they are a charity for people with a broken aerobic system ME. They should make it clear that they are not describing our neurological disease. My stomach sinks every new time they open their mouths and more myths are sent into the ether.

this is another group which uses our suffering for their own gain.They have been told but never listen so I think it is long past the time we give them the benefit of the doubt. I do not like to be harsh, but if they can't get it right and see the harm they are doing they should get out of the game.

 

[Wonko]

My Bella ME!
You were a child of the sun
And the sky and the deep blue sea.

Good luck getting that tune out of your head.

What tune?

MCI has it's advantages it seems

 

[Adrian]

Are Afme no longer forum members - tagging doesn't t seem to work

@Action for M.E. should tag them but something seem to be picked up in the finding name bit of the tagging (don't know why). They are still members but the account hasn't been active since March 2019.

 

[duncan]

What tune?

Ma Belle Amie. It was a one-hit wonder kind of thing in the late 60's, maybe early 70's.

MCI has it's advantages it seems

MCI likely is why I could not figure out that this tune would be way to old for most members to know.

 

[DokaGirl]

IMO, it's not possible for CBT to help one manage ME - not at all. Denying one's symptoms is not management of a disease. All that might help with this is venting for a while to a therapist. Someone paying attention. But, that's it.

What's needed other than effective drug treatments and a cure of course, are practical suggestions: sleep hygiene, affordable, supportive nutrition, the support of others (not always possible - but we can hope)....

It's always blame the individual for their misfortune - got ME? You're to blame. "CBT will fix that".

A bit early in the year, but bah humbug!


(About sleep hygiene - I find regular sleep patterns elude me - but here again, I hope.)

 

[Arnie Pye]

IMO, it's not possible for CBT to help one manage ME - not at all. Denying one's symptoms is not management of a disease. All that might help with this is venting for a while to a therapist. Someone paying attention. But, that's it.

I suspect even venting to a therapist isn't a possibility in all cases of CBT. I've read about some health authorities using group therapy so you are with up to 15 other people when getting CBT. I wouldn't open my mouth under those circumstances. I don't think my health problems are for public consumption in situations in which I could be recognised or identified.

 

[Trish]

I don't think CBT, even of the allegedly supportive kind (as opposed to the directive kind in PACE) involves much possiblilty for venting. At least not in my limited experience of 6 individual sessions. It was all about shutting down those pesky negative thoughts and replacing them with positive ones.

The day I turned up feeling really awful ME wise and was reduced to tears by having to climb two flights of stairs to get to the therapy room, venting was definitely not allowed. I was told firmly that I should have cancelled and come back when I was in the right mindset to be positive, or words to that effect.

 

[chrisb]

I suspect even venting to a therapist isn't a possibility in all cases of CBT. I've read about some health authorities using group therapy so you are with up to 15 other people when getting CBT. I wouldn't open my mouth under those circumstances. I don't think my health problems are for public consumption in situations in which I could be recognised or identified.

It seems strange that they would have a recommended form of treatment which by its very nature breaches patient confidentiality. Is this ethical?

 

[Arnie Pye]

It seems strange that they would have a recommended form of treatment which by its very nature breaches patient confidentiality. Is this ethical?

I don't know. I wish I did. I'm putting off going to my GP at the moment because I expect to be given a dustbin diagnosis and a referral to CBT. I've got enough crap on my medical records without that.

 

[Cinders66]

It could be a good article, but is let down by some of what Clare Ogden says:

my bolding.

Why do AfME keep misrepresenting pacing, and why do they misrepresent the CBT that is prescribed for ME? And why do they not say how few actually recover?

This to me is right royal fence sitting so sitting somewhere between what active patient community says and the establishment provision /line. The question as you say is why...

 

[NelliePledge]

I suspect even venting to a therapist isn't a possibility in all cases of CBT. I've read about some health authorities using group therapy so you are with up to 15 other people when getting CBT. I wouldn't open my mouth under those circumstances. I don't think my health problems are for public consumption in situations in which I could be recognised or identified.

The low intensity 1-1 IAPT CBT i experienced was 30 minutes every 2 weeks. Minimal interaction with the “therapist” The time includes filling in the questionnaire and handing out the next worksheet and making sure you’ve understood it. Barely even allowed to spend time on how you got on with the previous homework. I ran over to 40/45 minutes each time because I struggled with the minimal engagement and lack of discussion. Very different from the person centred counselling approach I’m used to which I definitely use as a venting session when needed.

 

[chrisb]

That sounds to be fulfilling the primary purpose. Ensuring the employment of the appropriate number of therapists. I am sure you felt the benefit of their input.

 

[Simbindi]

Why do AfME keep misrepresenting pacing, and why do they misrepresent the CBT that is prescribed for ME? And why do they not say how few actually recover?

I didn't know anything about AfME before using this forum. Now (having learnt more about them) it seems clear to me that AfME do not want to be a charity specifically for ME sufferers, that is, for people with ME (including those diagnosed with ME/CFS or CFS) whose symptoms include 'post exertional malaise' as we understand it: a worsening of all ME symptoms - not just 'post exertional fatigue' - after trivial exertion (where the 'exertion' may just be cognitive in nature).

AfME want to be a charity for all people suffering from chronic, long-term idiopathic fatigue. This captures a much broader and larger 'chronic fatigue' patient community. In turn, this means their charity can have a much wider appeal and an obviously bigger potential income, as well as being the 'go to' charity for the DWP and the NHS. 'Action 4 ME' having the term 'ME' in their name is very damaging for the ME patient community: they need to rebrand the charity with a more appropriate name - this would be the honest and ethical thing for them to do.

This is also the problem with the current (2007) CFS/ME Nice guidelines - they seem to be written to include all of the patients who meet the Oxford criteria for CFS (although parts of it do contradict this in their wording, the overall emphasis ignores the severity of PEM and the severity of the memory and cognitive impairments that form part of even the 'mildest' form of ME).

This is also my main worry about the current revision of these guidelines. We know that the lay member and some of the professional members and the 'expert' advisors, have an excellent understanding that 'ME (or ME/CFS) with PEM' is the condition that desperately needs an approprite set of guidelines to safeguard and provide appropriate healthcare and management strategies for its sufferers. Unfortunately, there are also professionals on the committee who want to keep the guidelines much as they are and for the revised guidelines to encapulsate this much wider Oxford definition of 'CFS' (or rather CF) sufferers.

It's not helping us at all that AfME seems to be singing from the same song sheet as these broad 'Oxford defintion of CFS/ME' supporters.