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M.E. discussed Live now on channel 5 wright stuff

golden

Senior Member
Messages
1,831
Stigma and M.E. Anything changed since the WHO acknowledged it as a neuroligical condition in 1969 was the debate.

Sonya from action for M.E. Was the representative on the show.

Its on channel 5 plus - channel 44 coming up in the next few minutes again...


I was very disappointed in the Discussion although its main message was to stop stigmatising M.E. As lazy hypochondriacs.

There was no mention of all the bio markers only this idea its an 'invisible illness' 'like bi-polar and depression'.

And no mention of Hyde M.E. Pretending instead its some 'mysterious illness'.
 

golden

Senior Member
Messages
1,831
Holly Buckley couldnt travel to the studio like she wanted, bless her but she did get a mention.

http://www.telegraph.co.uk/health/10801148/ME-has-turned-my-life-upside-down.html

Of sufferers getting abuse not sympathy.

The corrie guy was the best, I felt. He also spoke of a 7/8 yr old girl put in hospital for 6 months and onto anti-depressants because they didnt understand M.E. He said it was only when her father took her to a homeopath, they started to find some underlieing causes.

But over all actual details of the illness didnt come across very well. 'neurological' wasnt explained.

For example - I cant drive a car because of the neurological problems currently.

'tired, exhaustion, countless aches and pains' were focused on.

Where has the stigma come from? Corrupt PACE studies - not even mentioned.

A study was mentioned that 84% of neurologists didnt believe M.E. Was a neurological illness.

A study in 2010 28% say Doctors told their patients M.E. Was purely psychological.

a study stated 84% of neurologists
 

manna

Senior Member
Messages
392
hopefully it'll be on-line in a few days..will be interested to watch...i find that wright can be a little pernicious some times so will be interesting to see if he thinks its a malingerer's "illness"..
 

golden

Senior Member
Messages
1,831
No, that definately didnt come across. Which is very good really. I am being grumpy about it all because it just wasnt accurate or detailed enough for me.

And it didnt raise the issues effecting me... Unable to get to doctors, not lustened to, ignorant of POTS/OI - never done all the testing - akthough Sonya from A4ME mentioned the

Missed diagnoses problem

Left without any benefits - in debt... No help from friends or family...

People understand M.E. Through their own experiences.

So Matthew Wright said:

"i know someone who had M.E. And they have actually recovered...i felt a genuine frustration...Come On! get better!"

I am actually like that with myself and others lol So I empathise with this frustration.

But really dont need it from my christian evangelist neighbour who thinks we are all sinners who jyst need to do hard days work :(

Different leveks of stigma coming from all angles - unrelenting





Matthew Wright
 

Min

Guest
Messages
1,387
Location
UK
It was disappointing, with only the mildly affected and the recovered being represented.

Action for ME's CEO appeared to praise the fatigue clinic's management techniques that have pushed so many of us into permanent severe disability, and infer that they somehow actually help us. Much of the stigma comes from these dratted clinics, they are not fit for purpose.
 

manna

Senior Member
Messages
392
ah well that sounds ok'ish then, minus going more indepth. apparently everyone knows someone with it now. the numbers and the personal experience of friends or families will change things hopefully. unfortunate that it takes more suffering to bring awareness. and gahh! at the neighbour! they probably think you have bad spirits hanging around :eek: im surrounded by neighbours who hate me :thumbdown:

action for M.E. don't really represent the me/cfs community do they?
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
I was very frustrating they didn't go into those details. They compared it a lot to bipolar and depression when there isn't any connection. I wish the action for ME speaker had spoke more about the physical aspects of it and the amount of inappropriate diagnosis with people with depression, post viral and Lyme being diagnosed with ME. There was no mention of ebv or pots and its common connection with cfs.

They did talk about the way we are dismissed by drs which was good but most people already know that aspect. We need to talk about the medical side of it.

I was also annoyed about the mention of fatigue clinics. I deal with the chronic fatigue services in queens (the old Essex inpatient facility was there). There system is flawed and hasn't helped me at all. Dr findley himself prescribed me innapropriate medication which led me into depression. I will NEVER do that again. They were praising him as world renowned for cfs and all sorts or crap. They shut down the queens clinic because it was barely in use. Tell the truth!!! It's great that they shut it down imo. Luckily the inpatient clinic shut down before I got cfs.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
ah well that sounds ok'ish then, minus going more indepth. apparently everyone knows someone with it now. the numbers and the personal experience of friends or families will change things hopefully. unfortunate that it takes more suffering to bring awareness. and gahh! at the neighbour! they probably think you have bad spirits hanging around :eek: im surrounded by neighbours who hate me :thumbdown:

action for M.E. don't really represent the me/cfs community do they?
Action for me are the biggest ME charity in the uk that support me patients.
 

Min

Guest
Messages
1,387
Location
UK
Action for me are the biggest ME charity in the uk that support me patients.


Many of us feel completely betrayed by them, their collusion in the PACE trial, their promotion of GET and CBT, their willingness to work with the Wessely school of psychiatry, their refusal to offer full membership and voting rights to any but their executive, their advertising of the Lightning Process and their enornous salaries compared to tne tiny amount they spend on research.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
Well I don't have any involvement with action for me. I can see the direction they send there patients into. Ayme too. Does invest in me do much to support patients?
 
Messages
1,446
.

Min wrote re Action for ME (AFME):
"..their collusion in the PACE trial, their promotion of GET and CBT, their willingness to work with the Wessely school of psychiatry, their refusal to offer full membership and voting rights to any but their executive, their advertising of the Lightning Process and their enornous salaries compared to the tiny amount they spend on research."
.

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The last time AFME were asked how many members it had (charity members, not FB members) - AFME said 6 and a half thousand. That is, 6 1/2 thousand members and £500,000 on staff salaries. AFME has lost thousands of members in the last decade.

Action for ME has lost a lot of members; people who have left the charity in frustration or disgust due to the reasons Min listed, and due to AFME's sit on the fence attitude, its adherance to the fatigue clinics, and its tendency to do smokescreen publicity, like today on the Wright show.

AFME could have lobbied for the CCC at any time in the last decade but did not; instead, it's still promoting the fatigue clinics and a broadbased, fatigue based diagnostic process, giving the Lightning Process and other NLP 'cures' advertising space in the charity magazine (which AFME takes money for).

AFME last year engaged 'an ME Ambassador' who says she recovered with Micked therapy. MIcked is an NLP training with psychotherapy (except the Micked therapists have never actually trained in psychotherapy, but that doesn't stop them).

.
The decades are passing, but AFME is still stuck in the dark ages, still showing a publicity veneer of claiming to represent ME, but still condoning CBT/GET, the clinics, and NLP psychobabble..
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AFME charity staff come and go, they stay a few short years and then move on to other jobs. AFME staff are not experts, not even as informed as a great many patients are.


But we are stuck with their construction of ME and their wishy washy 'ME is anything anyone says it is' and can be 'cured' by psychotherapy etc.

.


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Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia

Ambrosia_angel

Senior Member
Messages
544
Location
England
Action for me was insistent that it was physical today though. I wish they'd just be honest. Lying lying lying all the time. That's why Ayme wasn't doing it for me. Just too much falseness from them about how they believe ME should be treated. Then they have girls in wheelchairs on the cover the website to represent an illness they recommend to be treated with low dose antidepressants and cbt. Sadly parents and of course children are oblivious to this.

I believe that NICE only add physio to the list of treatments to make patients feel better about it not being all in the head. Not because it might make a physical change.