NHS CFS Service leaflet from the UK's NHS Maudsley Hospital

[Enid]

Much enjoyed Silverblade - there he is - Vincent Price ! Hope the patient got away.

 

[Bob]

lol, Silverblade!

If it wasn't such an uncannily accurate picture, if would be very funny. (Should we laugh or cry?!?)

Should we name the three psychiatrists?

I reckon the one in the middle must be Wessely, as he seems to be the gang-leader.

 

[Desdinova]

They now claim the improvement is entirely cognitive, which is what we knew all along - if you condition patients to complain less about their symptoms, they report less on symptoms.

Not to mention the effects of hopeful optimism and wishful thinking. I'm sure that more than a few of those that enroll in such programs are often at the least very concerned about their current state of well being. And at the worst desperate for something to stop or ease their symptoms so they can return to live the normal productive life they once enjoyed.

When you feel that your life is going down the drain with very little answers, and lots of doubt and disbelief radiated at you by other people. A person will often tend to grasp at anything in desperation to save themselves. Given these factors it seems only logical to me that those who's illness hasn't progressed far or isn't as sever or disabling yet would be able to push down or through their symptoms. Maybe even ignore them out right for a short time. Only in the long term for it not to last and often cost them far more then they gained.

 

[Bob]

This is refreshing, and very helpful, a poster from the The Young ME Sufferers Trust (Tymes Trust) in the UK, which is headed by Jane Colby:
http://1.bp.blogspot.com/-rUdOZoZKsCs/Td1Yz1CGiCI/AAAAAAAACtg/TxcowfyPoqM/s1600/stop+GET+and+CBT.jpg
http://www.tymestrust.org/pdfs/ttstopposter.pdf

Here's their text on the subject:
http://www.tymestrust.org/pdfs/vision2011-1insert.pdf

Here's the Tymes Trust's website:
http://www.tymestrust.org/

And here's a letter that Jane Colby sent to the Guardian, re the PACE Trial:
http://www.guardian.co.uk/society/2011/feb/24/truth-about-exercise-and-therapy/print

 

[SilverbladeTE]

Enid, Bob
*bows with a theatrical flourish and a rougish twinkle in his eye*

Hey! Middle one's obviously Wessely Witchfinder General!
*Vincent price voice*: "CONFESS, WITCH! You do not have ME/CFS! There is no such thing! You are just a slacker slut! get back to your work as an MP and stop scrounging off the state! Ten strokes of the cat' for this one, Mr White!.....Hm, you disturb me, Mr White! You're enjoying this far too much!"

 

[themjay]

For my first post I thought it might be useful to recount the experience I had yesterday at a similar centre in the North of England.

As one of the UKs oldest fatigue services, it too is located in an odd juxtaposition of dilapidated psychiatric ward and painfully inadequate attempts to modernise the areas patients initially encounter. Access for my wheelchair was poor with cars parked over the only path I could use and the lift was barely able to accommodate my carer and myself - the fatigue service was located on the first floor at least 1 km from the main carpark and 600m from a patch of rough ground that doubled as an overflow. It shared waiting rooms with the gender reidentification and eating disorder service.

I had been referred here following a visit to an immunologist, who claiming to have a special interest in CFS/M.E. was very reluctant to carry out blood tests as he assured me they would all be normal and that this was the correct course of treatment.

I have been registered disabled with M.E. for seven years and have always regarded with deep suspicion therapy offered by the National Health Service. The simple fact is that lack of personal resources mean that I am desperate for any relief. I think that this is a crucial point in the U.K as any state benefits are heavily dependent on opinions of health care professionals within the system I feel that this is something I have to be seen to be doing just to qualify for day to day financial support.

I had to travel 90 minutes to the appointment which was with the aforementioned immunologist and a liaison psychiatrist. The initial written questionnaire was solely weighted to fatigue and mental health symptoms with NO mention of any other symptoms. The room was stark and they positioned themselves against a bright window it felt more like a job interview than therapy consultation! Knowing my limited energy, nethertheless the session lasted 2.5 hours. Needless to say I was punch-drunk by the end. There was lots of talk of proven evidence based treatment and holistic viewpoints but it all felt forced and was CBT/GET/Pacing dressed up in tactile New Age terms. Their opinion on holistic medicine also differs from mine it would seem they merely mean they use drugs to treat both the mind and the body! I tried to pinpoint concrete therapies that they would be using such as for pain relief and was advised they had evidence based good results with low dose antidepressants and an anticonvulsive drug Id heard it all before by this point. I asked if any hands on therapy such as osteopathy was offered as this is something I find helpful but was told this sort of treatment was considered only short term help and therefore not part of the ethos of long term recovery (unlike a daily dose of epilepsy drug I presume) Budgetary restrictions were also cited. The staff obviously do genuinely want to help they assured me that no one was beyond assistance; it just seems their hands are tied by the framework they operate within.

The interview concluded with the assessment that I was obviously too ill to attend regular therapy sessions at the unit and would need to be treated by their home team. However this needs funding approval, so my doctor has to refer me again to see whether this will be granted. Another three-four month wait is on the cards and I didnt even get a nice glossy brochure as souvenir of my day out

 

[Bob]

hi themjay,

a very big welcome to the forum to you...

thank you for sharing your experiences with us...

the old buildings and the bad access are pretty normal for the NHS, unfortunately, aren't they!

Although the whole experience sounds pretty awful for you, it actually sounds better than I would have expected in most NHS settings.

They actually sound like they are interested in you, even if their treatment protocol is misguided.

I've never heard of anticonvulsant drugs being prescribed... I wonder what drug that is... Do you have any idea?

I hope you have a great time of phoenix rising... be sure to keep posting!

Bob

 

[themjay]

Hi thanks for the welcome - I believe the drug is Pregabalin but it is not an avenue I will be exploring...

 

[Wonko]

Anticonvulsants have previous helped me with brain fog, but I've never heard of them being prescribed for ME either - as the side effects can outweigh any benefit probably not a good road to go down.

 

[Sean]

I like how they feel the need to keep telling themselves, mantra like, that their treatments are 'evidence based'.

Cancer specialists using chemotherapy don't seem to have this preoccupation.

I don't know whether to laugh or cry at that truth.

They really do seem to be trying very hard to convince themselves, as well as the rest of the world.

 

[Sean]

Since activity levels (at followup) don't change as a result of CBT, they can no longer claim that a decrease avoidance behaviour is associated with CBT improvements on self reported questionnaires.

http://www.ncbi.nlm.nih.gov/pubmed/21414449

They now claim the improvement is entirely cognitive, which is what we knew all along - if you condition patients to complain less about their symptoms, they report less on symptoms. Yet the paitients haven't actually improved as their activity levels haven't improved from their low level.

Nice summary.