Take part in our Severe M.E. Symposium from home

[WillowJ]

The NLP thing is pretty worrying.

Exactly.

They asked us: we could answer their questions.

If course people should do what they like, so these are just suggestions.

Regarding NLP, we can talk about outcome measures, blinding, provider allegiance, all sorts of things.

We can talk about the lack of funding for biomedical research.

We can talk about the van Griffith University sends to homebound/bedridden patients to actually take bloods for research.

Good psychological support (although I do not know a lot about it, NLP may not be the best example of this; not all CBT is either) should be offered to people who want it, but that is likely not what most severe patients most need & want (NB: most long-term patients have learnt good coping skills--Jason has a paper on this) and it may be taking energy away from something more helpful (even for mild and moderate patients this would be a concern, but it is a serious concern for severe and very severe patients, as it could interefere with, for instance, eating or socializing).

And overbilling psychological support as a treatment for ME and as recovery strategy (whether in publications, which is bad enough, or during treatment, which likely does harm to the patients in question, as they may feel at fault, or may be blamed by the therapist, when they do not recover), rather than as a coping strategy which it should properly be considered as, is problematic.

AfME should take a strong stand about such issues.

 

[Dr Speedy]

#‎FINE Trial: #‎CBT is useless 4 Severe #‎ME
@
Another CBT denial cracker: “The bastards don’t want to get better” http://tinyurl.com/pl6kard
#‎cfs

 

[Min]

Here's Claire Mcdermott relating how she recovered:

The turning point in recovery was seven years later when I received a more holistic form of intervention which included both addressing medical and practical issues, and looking at emotions. Exploring emotions and their effect was a long journey, the early stages of which seemed difficult and sometimes threatening. Opening up to emotions long suppressed can seem like the mythical Pandora’s Box. At first I did not feel very trusting, even hostile at times, but with warmth and acceptance many difficult things gradually became possible.

For me finding a way out of the jungle of illness involved exploring and ‘mapping out’ a mental picture of where energy comes from and where it gets lost. I did not know the term ‘emotional processing’ at the time when I was rehabilitating. Emotional processing still sounds a clean tidy word for what often seems a difficult and messy process. Yet when I first saw the emotional processing schema developed by Roger Baker, it fitted and clarified part of my experience. Either consciously churning over emotions without resolution or blocking them from conscious thought can use up considerable energy.

I found it enormously helpful that those working with me avoided simplistic interpretations. If processing painful emotions helps recovery, it does not necessarily mean that the symptoms involved are any less physical, nor less real. Whilst emotional processing was a useful part of rehabilitation, taking proper rest periods and getting an electric wheelchair to increase my independence in the early stages were equally crucial.

A key factor in my recovery was the realisation that it is possible to learn to distinguish and utilise positive energy resources. Some activities seem to drain energy. Others seem to enhance it. That is just as true whether you have CFS/ME or not but in an illness where energy is in short supply, gradually redirecting one’s life towards energy enhancing activities and relationships can produce an upward spiral of improving quality of life and health.

http://www.emotionalprocessing.org/...Physical Health/chronic fatigue syndrome.html



I am incredulous that AfME believe this is the sort of 'treatment' those severely affected with a neurolgical illness want or need.

 

[Snowdrop]

"I received a more holistic form of intervention which included both addressing medical and practical issues,"

Perhaps she addresses this elsewhere but why does the actual medical intervention not receive any attention. It would be useful to know. I see this over and over for people who have recovered with the help of CBT. They claim it as part of their recovery therapy but you never get to hear about the medical part. Why not?

I don't even disagree with the idea that difficult emotional things take up more energy than happy things. Which again, applies to everyone. Why not spend research dollars on the biomedical intervention that supposedly also lead to recovery. Or was that of no real significance? In which case CBT did all the work? Was it the most significant factor in recovery?

What part do emotions play in the aetiology of ME the illness according to this model of recovery?

 

[Revel]

@Min, well I'm 'processing' an emotion right now !!

 

[justy]

I have asked to go on a virtual round table discussion - apparently they will pick the names out of a hat.

 

[justy]

It would be good to get a bit of a discussion going over in their severe M.E symposium - so far only one response - and I do believe AFME will be looking at the responses and taking them into account. It looks like you may have to sign up to be able to post? i'm much too drained to look into it further right now.

https://www.actionforme.org.uk/get-...bc4-80e0-0d187f2524f2&time=635503769369164100

I also think that for the virtual round table discussions 45 minutes is too long for a session - 30 minutes on live chat would be a challenge, but 2 45 minute slots - even if they are apart by 90 mins for a rest is over exerting for me and im in the moderate end of severe (not continuously bedbound). I hope Sonia Chowdoury is reading this thread.

 

[Snowdrop]

I'd also like to give consideration to the idea that when people change their thinking about something the real effect often comes I think from the fact that the thought change is often accompanied by the thought change spurring a change in their physical circumstances. This is only possible for people who are in a position to have options like changing their job their location, in other words a degree of financial stability. It would be good to ruminate on how much was just thought change as opposed to a change in thinking that led to physical changes requiring financial capabilities.

Something people who have been marginalised long term would find difficult to act on. Unless the researchers would like to involve themselves in fixing difficult/energy draining emotional issues with help with housing, feeding, loneliness etc.
I'd support that.

 

[CantThink]

What I would like to know:

1. What outcome would occur if this 'recovery' model was taken and applied to another illness like say MS or Lupus or Hypothyroidism... All of those have fatigue as part of the symptoms, all are to some greater or lesser extent debilitating = medical and practical. As a result of those issues the illness may also cause emotional difficulties, plus (to my unscientific mind) would have as reasonable chance of the sufferer having had emotional issues pre-illness development.

I just wonder how much of the possible success with some M.E. sufferers would be down to disease specifics or how much would be a shared chronic illness experience.

2. What is an 'energy enhancing' activity in M.E.?

I have yet to find one. Every expenditure of energy AKA performing an activity ultimately drains me - some more than others, but still... I do not experience energy gained from energy expended in an activity. I do, however, experience positive emotions AKA enjoyment/joy from some activities that are enjoyable versus chores. So that mea
means afterwards I can lie on the couch or in bed and feel uplifted, but it doesn't give me energy.

 

[Dr Speedy]

will AFME ct 2 promote useless CBT, dangerous GET, useless NLP etcetera 4 ME ?? or get us proper Rx ??

 

[Dr Speedy]

or r u the psychiatric fatigue charity / society ??

 

[CantThink]

I also think that for the virtual round table discussions 45 minutes is too long for a session - 30 minutes on live chat would be a challenge, but 2 45 minute slots - even if they are apart by 90 mins for a rest is over exerting for me and im in the moderate end of severe (not continuously bedbound). I hope Sonia Chowdoury is reading this thread.

I agree. I cannot do it anyway as I'm going to be busy preparing to go into hospital, but a live chat is extremely draining as to follow it your mind has to be switched on the whole time and focused. I can spend some time on a forum because I can adjust my focus and take as long as I like responding etc.

I'll try to access their forum later. I tried yesterday but was unsuccessful. I might email a letter but I'd need to spend some time preparing that and check it over for errors. I'm not sure how to get my thoughts down logically as there's so many points about different issues and they are in some ways quite independent of each other. It's like a big jumble in my mind!

 

[A.B.]

I'd also like to give consideration to the idea that when people change their thinking about something the real effect often comes I think from the fact that the thought change is often accompanied by the thought change spurring a change in their physical circumstances.

I think the human brain is very good at seeing patterns and finding explanations for things. When somebody starts feeling better, it only takes a person a moment to come up with an explanation. Often a change in health will be interpreted in psychological terms because that's the zeitgeist. Everyone else does it, and there is often no better explanation (but that doesn't mean it's right).

 

[chipmunk1]

#‎FINE Trial: #‎CBT is useless 4 Severe #‎ME
@
Another CBT denial cracker: “The bastards don’t want to get better” http://tinyurl.com/pl6kard
#‎cfs

PS: this report is so sad and badly researched that the so-called researchers don't even know that ME means Myalgic Encephalomyelitis and not myalgic encephalitis

This is a quote about M.E. patients from a supervisor of the UK Medical Research Council funded FINE trial, in which nurses were brainwashed to believe that the illness (which has always been classified as neurological, and never as psychological) was somehow a result of false illness belief and deconditioning. The nurses were then sent into unsuspecting patients homes to 'cure' them with graded exercise and cognitive behaviour 'therapies'.


the nurses then had the audacity to blame the unreasonable patients for not recovering! Can you imagine the outcry if nurses had been sent out to sufferers of other neurological illnesses e.g. MS. Parkinson's etc, to peddle their dangerous nonsense, and then returned to call the patients 'bastards who didn't want to get better'?

 

[Research 1st]

It looks like this isn't a severe ME symposium at all, but one for people with chronic fatigue of unexplained cause who are in their homes. This is what AFME appear to represent, most unlike InvestinME who focus purely on biomedical research and do not back the psychiatrists who keep patients ill by misrepresenting them in society as mentally ill.

As long as AFME continue to support the biopsychosocial school of CFS, then they will have little respect or interest from those with organic CFS and ME, irrespective if they label a campaign drive as for the ''severe'' or otherwise.

Actions, speak louder than words.

A lot is said, and nothing of note is ever achieved.

Still, working for charities in a paid position funds the mortgage off I guess, not that anyone with ME CFS could ever buy their own house as they're too ill to work.

It's a shame we have to rely on others for every single last drop of worth. If only we could represent ourselves and we could have a voice. (Speaking through others isn't pleasant, when our voice doesn't represent our thoughts).

No one in 2014 seriously believes that psychological therapies are anything other than a mildly useful coping tool for some people. But still they remain fully supported as legitimate 'treatments', even promoted by some as getting people from their beds, back into education, employment and freedom.

If only it was that easy.

 

[Revel]

@Research 1st, following posts by @CantThink and @Min regarding AfME, I did a little digging around. I was shocked at the salaries offered to paid employees. It's easy to see where the money from fundraising goes!

So what do we do here? Use the symposium to express how we feel en masse, or ignore the opportunity to vent in protest? I'm confused.

 

[justy]

Use the symposium.

 

[Min]

@Research 1st, following posts by @CantThink and @Min regarding AfME, I did a little digging around. I was shocked at the salaries offered to paid employees. It's easy to see where the money from fundraising goes!
.

The CEO of Action for M.E. earns £75k/$122k per annum yet they gave only £61k/ $92k to research in 2013. Despite only having 5,000 members their salary bill that year was £545k /$913k


http://appointments.thesundaytimes.co.uk/job/418318/chief-executive

 

[CantThink]

This is my proposition:

I'm thinking to use the email option to write a letter detailing why they're failing us - severe and everyone else. This will take me time. Going to start today.

I shall post the letter on my blog on the day of the symposium. That's my protest. As a child I was a member of AfME. They've let me and everyone else down...

Thing is, I have always viewed charities as on our side, working for the good of the cause, and when you start digging... You see that may not be the case or they have contributed to perpetuating the miserable CBT/GET CFS services throughout the country.

The NICE guidelines and the CFS Service provision is IMO the reason I've not been tested for co-infections, not had a rheumatology workup for twenty years and many other issues where there's zero care and medical involvement/treatment because as far as the system is concerned - I'm being 'treated' as I should be... AKA receiving no M.E.-related medical care and being left to wilt away at home.

What concerns me is that as a national M.E. charity, they of course will and do attract many members. As a result, they have power - within the M.E. community, within the medical community/NHS and within the (national) media. They speak for us regardless of whether we want them to or not and regardless of whether we are members or not.

I believe that by not just sending them my views via email, but also making those views available in the public domain, it gives others a chance to learn about AfME and why this charity may not or does not have our best interests at heart. There are other British charities that counter that, for example by promoting and funding biomedical research.

 

[Revel]

@CantThink, I agree. I think I will go ahead as originally intended, but not worry about expressing exactly how I feel.

Like you, I will do it over the weekend. The deadline co-incides with my 50th birthday, so I want to have submitted it beforehand as I find communication in any format quite draining. I want to at least be able to crack a smile on my so-called 'big day' !