(Not a recommendation) Essex CFS service self-promotion for ME awareness week

[sarah darwins]

Laughter is tricky when you feel so ill but it is very healing.

She's right — laughter is tricky. But reading this sort of thing definitely helps.

Wasn't it Readers' Digest used to do 'Laughter is the best medicine"? I seem to remember Viz magazine having a nice alternative version of that.

 

[meandthecat]

laughing and meditation... I can feel myself getting better

 

[Mij]

That's horrible stuff. They have no understanding about pathophysiology, about the disease. They think we're simply tired, unmotivated folks who don't want to work.

I did all that before becoming ill and it didn't prevent me from getting ill. Just complete ignorance and quite insulting actually.

 

[Chrisb]

I am sure we must take at face value the claim that she has recovered and will not now relapse, two and a half years after becoming ill. I recall that in 1980/81 I was told that most people recover fully within 3 years and to go away and try and get on as best I could. There was no practical medical intervention.

I wonder how the success rate of Essex CFS service compares with doing absolutely nothing.

 

[AndyPandy]

I've had nearly 5 years of "me time" as a result of ME.

Mostly too ill to engage with others.

 

[tinacarroll27]

I still find it shocking that the NHS is treating ME in this way. We all expect the highest standard from the NHS but it seems that it's become so over run with private vested interests that it can't be trusted any more to make decisions on behalf of patients, especially this illness. I am hoping that when we get a bio marker this kind of thing will come to an end but I think the old guard in the uk will try and hang on in for as long as possible. They have a lot to gain by claiming it's an aberrant belief. We have been a cash cow for this kind of thing for a long time. The CBT business must be making a great trade for therapists. My boyfriends ex therapists was even trying to get access to me, once she found out I had ME, through him. Kept telling him I needed to exercise and have the lightening process and he should bring me in to see her (apparently she was qualified to give that as well). Eventually he left her because she upset him a lot by belittling his life experiences that lead to his condition(he suffers from post traumatic stress and does not have ME). She was a private therapist giving CBT but I think she also worked for the NHS at one point.

 

[user9876]

We have been a cash cow for this kind of thing for a long time. The CBT business must be making a great trade for therapists.

It would be interesting to know if the Fatigue services run by various trusts are profit making in terms of what they charge the CCG vs the actual costs. If they are it means organizations like QMUL will be interested in protecting bad research.

 

[charles shepherd]

Essex CFS Service:

From the not so distant past:

http://www.meassociation.org.uk/201...-to-consider-wider-implications-20-june-2014/

 

[Esther12]

Essex CFS Service:

From the not so distant past:

http://www.meassociation.org.uk/201...-to-consider-wider-implications-20-june-2014/

It's difficult to know if Noreen Buckley is very stupid, or if she just thinks that patients are very stupid.

It also does not necessarily represent the views of the authors.

...

This piece was written purely as a hypothetical deliberation.

It does not reflect the authors’ views on the realities of living with, managing or treating CFS/ME.

 

[Bob]

The Essex CFS Service should have been shut down after that scandal.

 

[Aurator]

I wonder how the success rate of Essex CFS service compares with doing absolutely nothing.

Apparently it compares very favourably:
"Essex CFS Service is a rehabilitation and recovery service and therefore we work with patients to help them achieve a good quality of life, even if they do not make a full recovery to their pre-illness levels of activity."

So patients can only get better there, not worse - unless they stubbornly refuse to be de-memed, that is.

 

[meandthecat]

I wonder how the success rate of Essex CFS service compares with doing absolutely nothing

Do the ME centres release data, or even compile it on the outcomes of their approach?
When I was 'discharged back into the care of my GP' I guess they washed their hands of me but since no GP has ever acknowledged that it exists have I been assumed to have recovered.

Nothing would surprise me around ME healthcare but I can't recall anything

 

[KristenSF]

Charming. No mention that this person was lucky.
http://bit.ly/24Zx8fg i.e.
http://www.southend.nhs.uk/about-us/media-centre/southend-news/nr-56-(2016)/
Could have been worse of course.

I read this earlier and was just so depressed. I'm still trying to wrap my head around what's happened to me. Mono two years ago, getting sicker ever since and mostly housebound.

I'm in so much pain I have contemplated buying street drugs, but I don't have the energy to go outside in search of them. I'm so fatigued that I'm often too tired to talk to explain to my wonderful partner that I am too tired to talk.

I'm still working full time from home and managing most of the household issues like finances and meal planning. I am running on fumes. Too tired to hold my head up straight. I know you all walk the same path, so I don't have to elaborate.

I read something like this just breathless for clues and race to the end looking for medical approaches that cured her and I get vague cliches about attitude.

As if I haven't kept a positive attitude, an open mind and scrutinized myself ruthlessly with the notion that this is somehow all my fault. Again, I'm new to this game and I guess I'm naive. But I just can't believe there are people who have such little empathy for very sick people that they would try to profit from our misery and offer false hope.

 

[eastcoast12]

I've had nearly 5 years of "me time" as a result of ME.

Mostly too ill to engage with others.

Yeah, I'm pretty sure none of us have problems getting enough me time. I'm thinking we all would probably like a little less me time and a little more me and someone, anyone time.
I've been on here for a little less than a year and I'm so completely confused how these "doctors" can be so fucking ignorant. It's almost like this is some kind of weird joke.

 

[meandthecat]

It's almost like this is some kind of weird joke.

I spent the first two years thinking I had fallen down a rabbit hole. Now I realise that I am still falling but so are so many others that at least I am in good company.