The Psychologist - views of ME

[Tulip]

Heapsreal,

With Dr Deed behind you and armed with all the knowledge you need of what this illness really is, it shouldn't be too hard. It just tends to be a bumpy road with many pig headed people along the way. The most important thing in getting on the dsp if ever needed, is to say you can not work at all, don't tell them you may be able to do an hour here or there as they will see it as you being able to work and you either won't get it or they will harrass you forever. The dsp is set up so that once you are on it IF you are well enough you can work a certain amount without needing to tell them and still get the payment. But.. the government is changing things slightly from january next year, and it may be a bit harder after that to get onto the dsp. It's actually the people with mental illnesses that they are trying to kick off the dsp.

Yes if your wife works part time you will still get centrelink payments, the cut off for family tax benefit a and b is quite high, dsp may be reduced slightly (if at all).

You can play around with the online family assistance estimator at the centrelink website to give you an idea of what you would get in family tax benefits.

Estimator here: http://www.centrelink.gov.au/internet/internet.nsf/individuals/online_estimators.htm

And info on payment rates etc for the dsp are here: http://www.centrelink.gov.au/internet/internet.nsf/payments/disability_support.htm

Hope that helps and good luck with the valcyte :Retro smile:

 

[heapsreal]

Thanks for that info. I think im going to have to work till i collapse then to get any chance, especially since they are making it harder to get.

cheers!!!

 

[Tulip]

Yeah it's a pittance!. But if you ever do need to go down that road because you simply can not work, if centrelink rejects you the commonwealth ombudsman is your best friend And with centrelink being a government dept, they can only deal with a certain amount of harrassment/appeals before they give in

 

[Tom Kindlon]

The Psychologist (the monthly publication of the British Psychological Society) recently published a summary of the findings of the PACE trial, exaggerating its effectiveness. Oceanblue and I wrote a letter in response to this article which they published in the June issue (see post 968 in the PACE trial thread), along with another mainly critical letter.

In the July issue they've published a letter by Kristina Downing-Orr which supports ours, saying that CBT and GET are 'as useless as a chocolate teapot'.

All very encouraging, but also in the July issue they've published the following summary of a paper presented at this year's annual conference, defining ME (though they call it CFS) as a 'functional somatic syndrome' :

Costly conundrum
Chronic fatigue syndrome (CFS) presents healthcare providers with a costly conundrum. Known by medical professionals as frequent consulters, sufferers of CFS tend to report around 16 different symptoms per patient. Most commonly these include concentration difficulties, muscle pain, fatigue, weakness and fever. At present there is no known underlying cause for CFS and no coherent approach to treatment. Moreover, outcomes for patients vary wildly depending on how improvement and recovery are defined and measured. Marie Thomas (University of Wales), Andy Smith (Cardiff University) and Gary Christopher (University of the West of England) ran a three-year study with the aim of developing a toolkit that would help to understand outcomes for sufferers of this most mysterious of functional somatic syndromes (others in this family include irritable bowel syndrome, tinnitus and chronic lower back pain). Over 200 patients were recruited from specialist CFS clinics and asked to fill out measures of well-being, quality of life and psychopathology as well as symptom checklists and measures of illness beliefs, history and severity; 84 per cent of participants believed that their illness had been preceded by a specific event, often a bout of flu. At three-year follow-up, 45 per cent said they were recovered with occasional relapses, while only 2 per cent felt they had recovered completely. One of the best predictors of recovery seemed to be employment; participants who were in work at initial testing were more likely to be in the recovered group at the end of the study.
Sarah Haywood

I sent this in August:

Dear Prof. Smith,

I would be interested to know whether "Measuring recovery in chronic fatigue syndrome patients and assessing the impact of associated risk factors on positive outcome" was ever published and whether it is possible to get a copy of it.

Thanking you,
Tom Kindlon
Publications: http://www.researchgate.net/profile/Tom_Kindlon2/

I got this reply:

Dear Tom,

It hasn't been published yet.

Best regards

Andy
Professor Andy Smith,

I find this data quite interesting:

At three-year follow-up, 45 per cent said they were recovered with occasional relapses, while only 2 per cent felt they had recovered completely.

That shows two very different recovery rates depending on how you define it (I'm not convinced the former should be called recovery).

 

[Tom Kindlon]

Here's the official abstract in case it is of interest.

http://abstracts.bps.org.uk/index.c...view&frmShowSelected=true&localAction=details

Conference Proceedings
Abstract Details
2011 BPS Annual Conference

Conference Venue: Marriott Hotel, Glasgow
British Psychological Society

From: 04 May 2011
To: 06 May 2011

Individual Paper(s)

Measuring recovery in chronic fatigue syndrome patients and assessing the impact of associated risk factors on positive outcome
M. Thomas
University of Wales

A. Smith
Cardiff University

G. Christopher
University of the West of England


The current study describes a large cohort of untreated Chronic Fatigue Syndrome patients at initial assessment and examines changes within the illness over three years.

Furthermore, a ‘current state of health’ scale, developed in previous studies, was validated for use as a method for accurately measuring recovery.

Possible predictors of outcome were then identified by investigating the role of baselines measures in subsequent recovery.

Two-hundred-and-twenty-six patients completed questionnaires at initial assessment.

The current state of health score was used to measure recovery six, 18 and 36 months later.

Associations between baseline measures of fatigue, psychopathology, mood, cognition, stress and current state of health were examined to look at the validity of the state of health measure.

Demographic and psychosocial characteristics were investigated as predictors of recovery.

Illness characteristics such as illness length, illness onset type and illness beliefs were also investigated as predictors of outcome.

There was strong evidence to suggest that the current state of health measure accurately describes the patient’s health at baseline.

Data suggests that illness length, symptom severity and health status have an important role in recovery.

The current state of health measure was validated as a method of accurately assessing the health status of patients and was used as an indicator of improvement and recovery within this group.

Spontaneous recovery in the patient group was associated with several factors measured at initial assessment.