Lady Mar writes to Prof Wessely

[Kati]

Sent Lady Mar a Christmas Card.

 

[Yogi]

The Countess of Mar is wonderful. She should keep up the pressure up as it is about time this scandal is opened up and exposed for what it is to the general public. Many scandals and institutional cover ups have been exposed in the media recently and this has got to be one of the worst. The abuse of very sick and disabled people has gone on for far too long.

Keep it up Countess of Mar !!!

P.S. Who believes that Wessely did not have sight of the letter written before it was sent to the Independent. I find it very hard to believe that 27 signatories would write about him with support in a national newspaper without his permission or sight of the letter?

 

[barbc56]

P.S. Who believes that Wessely did not have sight of the letter written before it was sent to the Independent. I find it very hard to believe that 27 signatories would write about him with support in a national newspaper without his permission or sight of the letter?

Why would that make a difference?

 

[Wildcat]

.
@ firestormm - please don't assume that all those who criticise CBT (for ME, or CBT per se) have not ever engaged with CBT….. or don’t understand mindfulness – many do…. And find it lacking or irrelevant.




.Firestormm wrote - "Different diagnoses same kind of issues holding us back from a better quality of life"


Uhh?? – ‘better quality of life’ is sure enhanced by being denied homecare, mobility aids, necessary disability benefits, helpful medication, realistic understanding of our illness by doctors, relations, friends – but hey, with CBT/ mindfulness we can put a mind-plaster on the damage caused by the misrepresentation of ME and the illness-plus-deprivation that comprises ME policy in Britain.……

.

 

[urbantravels]

Wessely's reply - one might say 'procrastinating'

Good God, can the man not answer a straightforward question written in plain English?

No, he apparently can't, because he fears his answer may be used against him by the community of militant and murderous patients. "Taken out of context" and so forth.

The question could really be answered in one or two sentences. But of course it would take many more words to write out an evasive answer which will allow him to have it both ways. He can't retreat from his position no matter how much new evidence emerges that directly contradicts his theory, because he has set himself up as the "foremost expert" on the disease and all kinds of policy decisions have been made based on his "model" of the illness.

If he is so certain he is right, what reason would he have not to state his theories openly? I can think of several and none of them reflect well on him.

 

[barbc56]

Uhh?? – ‘better quality of life’ is sure enhanced by being denied homecare, mobility aids, necessary disability benefits, helpful medication, realistic understanding of our illness by doctors, relations, friends – but hey, with CBT/ mindfulness we can put a mind-plaster on the damage caused by the misrepresentation of ME and the illness-plus-deprivation that comprises ME policy in Britain.

Can anyone comment on the validly of this statement? I'm not that familiar with all the inner workings of the medical system in Great Britain. WildCat, I'm not picking on you, but it would help if people who make such statements backup their comments with facts, mine own included.

I have no problem with posters saying a statement is a personal opinion but it's nice to know the difference!!

Barb C.:>)

 

[heapsreal]

Can anyone comment on the validly of this statement? I'm not that familiar with all the inner workings of the medical system in Great Britain. WildCat, I'm not picking on you, but it would help if people who make such statements backup their comments with facts, mine own included.

I have no problem with posters saying a statement is a personal opinion but it's nice to know the difference!!

Barb C.:>)

Probably hard for us to understand not involved in the UK health system. I think we find it hard to understand not get any real care. Even in australia we can atleast hunt around for a doc who is sympathetic to our cause and can treat us symptomatically. it seems like in the UK u get what u are given and if he's an A-hole of a doc then your up the creek without a paddle.

 

[ukxmrv]

I'm not sure what you are expecting as facts to back up Wildcat's posting Barb. I'm made a number of them on my personal experience which would echo this one.

My own experience would echo her posting. I think that it is a valid and precise statement of the UK position toward patients.

Not sure what you are after. Just say if you need more help to explain how bad it is here.

As an extra point I'd like to use something else from my personal experience to explain how bad things are here at an official level.

ME patients used to be able to attend the APPG meetings on ME. These are parliamentary groups set up with a special interest or focus. They comprise MP's and members of the House of Lords (like Lady Marr). I was sitting at the table surrounded by MP's and other patients at one of these meetings when this happened to me.

A person sitting next to me introduced herself as an aide to one of the current Ministers (then the Labour party). She wanted to know why PWME didn't "just accept that they had a mental condition and just have it treated". She also said "the only reason you don't accept that you are mentally ill is because you cannot cope with the stigma of mental illness".

At the time this happened I was so weak and in pain that the only way I could sit upright on the chair was to hang on to the table, so I wasn't able to get her name or follow this up. I did manage to put her right about the issues patients faced. When I asked where her opinion was forumulated from she said that the Minister had asked the "advisors" and been told this by the medical advisor to her department.

Yes, it is really as bad as we say it is.

 

[barbc56]

I would still like to see some documentation about these specific services being denied to ME/CFS patients in the UK>

 

[barbc56]

I'm not sure what you are expecting as facts to back up Wildcat's posting Barb. I'm made a number of them on my personal experience which would echo this one.

My own experience would echo her posting. I think that it is a valid and precise statement of the UK position toward patients.

Not sure what you are after. Just say if you need more help to explain how bad it is here.

As an extra point I'd like to use something else from my personal experience to explain how bad things are here at an official level.

ME patients used to be able to attend the APPG meetings on ME. These are parliamentary groups set up with a special interest or focus. They comprise MP's and members of the House of Lords (like Lady Marr). I was sitting at the table surrounded by MP's and other patients at one of these meetings when this happened to me.

A person sitting next to me introduced herself as an aide to one of the current Ministers (then the Labour party). She wanted to know why PWME didn't "just accept that they had a mental condition and just have it treated". She also said "the only reason you don't accept that you are mentally ill is because you cannot cope with the stigma of mental illness".

At the time this happened I was so weak and in pain that the only way I could sit upright on the chair was to hang on to the table, so I wasn't able to get her name or follow this up. I did manage to put her right about the issues patients faced. When I asked where her opinion was forumulated from she said that the Minister had asked the "advisors" and been told this by the medical advisor to her department.

Yes, it is really as bad as we say it is.

While I have sympathy for you having to go through this experience. It does not answer the question that I asked. I'm not doubting you specifically but to be frank, there have been so many misquotes/misperceptions, I would like to see them backed up.

Barb C.:>)

I do indeed expect facts unless something is stated as a personal opinion or anecdote. Without facts we will be denied any credibility and I don't think we have much now.

 

[ukxmrv]

Hi Barb,

Can you be a little clearer on exactly what you would like to see and also what sort of documentation? I'm thinking that you would probably need to put in a FOI request if you want to see this. I should be able to point you in the right direction if you are clear.

The NICE guideline would be a good place for you to look but you need to be specific on what it is you are after.

I'm also wondering why you would need to do this. Are you not happy to hear patients experiences instead. I'm thinking that you are looking for evidence that no Govt department would put into a policy in writing but I may be wrong.

 

[Kati]

I'm not sure what you are expecting as facts to back up Wildcat's posting Barb. I'm made a number of them on my personal experience which would echo this one.

My own experience would echo her posting. I think that it is a valid and precise statement of the UK position toward patients.

Not sure what you are after. Just say if you need more help to explain how bad it is here.

As an extra point I'd like to use something else from my personal experience to explain how bad things are here at an official level.

ME patients used to be able to attend the APPG meetings on ME. These are parliamentary groups set up with a special interest or focus. They comprise MP's and members of the House of Lords (like Lady Marr). I was sitting at the table surrounded by MP's and other patients at one of these meetings when this happened to me.

A person sitting next to me introduced herself as an aide to one of the current Ministers (then the Labour party). She wanted to know why PWME didn't "just accept that they had a mental condition and just have it treated". She also said "the only reason you don't accept that you are mentally ill is because you cannot cope with the stigma of mental illness".

At the time this happened I was so weak and in pain that the only way I could sit upright on the chair was to hang on to the table, so I wasn't able to get her name or follow this up. I did manage to put her right about the issues patients faced. When I asked where her opinion was forumulated from she said that the Minister had asked the "advisors" and been told this by the medical advisor to her department.

Yes, it is really as bad as we say it is.

Thank you for sharing this ukxmrv this is important to be shared.

 

[barbc56]

Specifically:

‘better quality of life’ is sure enhanced by being denied homecare, mobility aids, necessary disability benefits, helpful medication, realistic understanding of our illness by doctors, relations, friends – but hey, with CBT/ mindfulness we can put a mind-plaster on the damage caused by the misrepresentation of ME and the illness-plus-deprivation that comprises ME policy in Britain.

Most of the above can indeed be documented. If that isn't clear, so be it.
Barb C.:>)

 

[taniaaust1]

Not wishing to put words in beaker's mouth, but I read that bit completely differently - as people who are working and do not want their employer/colleagues to know they have ME (for fear of prejudice), not people who could work but do not want to and want to keep that from former colleagues or the tax paying public as (I think) you are reading it?

Similar to the following point about family - if you want to bemoan a lack of support from family without them seeing it and being hurt.

Thanks.. I now see it can be read two different ways.. and I was reading it completely in a black and white kind of way taking each thing literally.

sorry beaker.. I understand what you mean by your post now.

 

[taniaaust1]

But there comes a point where continuing investigations cease.

I personally think we all should keep our eyes out for other illnesses our symptoms are a good match for but yeah some do stop looking at other things at a point. I certainly thou havent stopped wanting testing done into other areas in which my symptoms match. Its an ongoing process as there is just soo many different rare medical things out there and it would be real pity if a person had one of those and it was missed even thou they had symptoms to which pointed to it.

The misdiagnoses rate with our illnesses (in which people end up being found to have other things) is very high so its well worth not giving up looking into othr things. Many of us long termers.. still get investigations into new things we hear about. I think it all depends on the individual.

 

[taniaaust1]

Specifically:


Most of the above can indeed be documented. If that isn't clear, so be it.
Barb C.:>)

I know in the past (and probably now.. as Im not in UK I dont keep up with the situation) in gov policy of how our illness is treated that it was recommended to not encourage the false illness beliefs etc etc and to limit testing etc (I hope someone does give you the link..it is documented in health system guidelines and stuff there).

I would still like to see some documentation about these specific services being denied to ME/CFS patients in the UK>​

Specific services often can be denied due to the belief in not encouraging illness belief as it would go against that principles.. patients too in which testing has been discouraged and hence coexisting things being missed eg POTS for example.. end up missing out on treatment etc for these things.
\
As I said I hope someone finds the link.. if you search thou you may be able to find the gov documents yourself thou, there is the gov evidence of it online due to hearings done in the past

 

[ukxmrv]

access to problems getting state benefits and the right level of benefit

From the Gibson report

(quote)
6.1 Patient Experiences
People with CFS/ME, like others, often experience great difficulty in obtaining
state sickness and disability benefits and this is reflected in the very high
proportion who only succeed by going through the stressful and bureaucratic
appeals procedures.
At present CFS/ME is defined as a psychosocial illness by the Department for
Work and Pensions (DWP) and medical insurance companies. Therefore claimants
are not entitled to the higher level of benefit payments. We recognise that if
CFS/ME remains as one illness and/or both remain defined as psychosocial then
it would be in the financial interest of both the DWP and the medical insurance
companies.

 

[ukxmrv]

Medical treatment of ME patients in the UK

from the Gibson report

1. 2.5 The Situation in the UK

2.5.1 Kumar and Clark Endorsed by the BMA
At present, the British Medical Association endorses Kumar and Clark’s “Clinical
Medicine Fifth Edition” and “Clinical Medicine Sixth Edition”. We have chosen this
book as case study of existing medical practise in CFS/ME cases. These texts
consider ME and CFS to be one illness. They also state that the term ME is
declining in use because it “implies a pathology for which there is no evidence”9. It
suggests that CFS is the correct term to use and that it is associated with
“Perfectionist, obsessional and introspective personality traits, childhood trauma
(physical and sexual abuse).” In the text’s defence it does have limited space for
each illness and does accept that there is “good evidence for the syndrome”. Yet
it only discusses the illness in the section on psychological medicine. In the fifth
Edition is does list Post Viral/CFS Under “Infectious Diseases” however it
immediately directs the reader to also see the Psychiatric Section and suggests
“two thirds of patients with a symptom duration of more than six months may
have an underlying psychiatric disorder”. The fifth and sixth editions both state
there is confusion surrounding the World Health Organisation definition.
While CFS/ME remains only in the Psychological section of medical discourse,
there can be little chance of progress. The Group was interested by the concept of
a “biopsychosocial” model of illness as long as one aspect is not given particular
prevalence over the other, both approaches must be considered at the same
time.

Also from the Gibson report

2.

CFS/ME is one of the most contentious illnesses in modern medicine. Due to a
lack of knowledge of and research into the illness in the UK it exists somewhere
between the schools of psychology and neurology. At present the only treatments
are symptomatic and psychosocial. For the extremely affected sufferer this is not
satisfactory. Nor is the current state of affairs satisfactory to this Group.

 

[ukxmrv]

Barb,

Have a look at these videos which are designed to train UK GP's to deal with MP patients.

(part 1 / 4)

 

[Firestormm]

Specifically:

better quality of life’ is sure enhanced by being denied homecare, mobility aids, necessary disability benefits, helpful medication, realistic understanding of our illness by doctors, relations, friends – but hey, with CBT/ mindfulness we can put a mind-plaster on the damage caused by the misrepresentation of ME and the illness-plus-deprivation that comprises ME policy in Britain.

Most of the above can indeed be documented. If that isn't clear, so be it.
Barb C.:>)

If you have applied for or feel you deserve or desperately need help that is being denied, because it is felt, your diagnosis is not being understood, then I can only imagine how CBT might be seen. However, whilst I am not going to deny it isn't a bloody hard fight at times to get help - help is there. It is sporadic and it can seem a 'postcode lottery' and a lack of help or understanding can drive one to despair if not into further poor health. Been there, got the t-shirt, still wearing it to some extent, and will probably need to fight even harder to keep what I have.

But. Is is any different, any easier, for anyone else with a condition that is not ME? Because I don't believe it is. Disability benefits etc. are based not on a diagnosis but on the extent to which a medical condition and disability affects the ability of the patient. Is the system fair? No it bloody well isn't. Two appeals and Two straight wins would seem to me to be proof of that.

Homecare. Well again, this would depend on the extent of your disability and not on the diagnosis. It is notoriously difficult to obtain but I do have friends with severe ME who do receive council-funded homecare. That does not discount how it must feel to be denied any benefit or homecare etc. when you are desperately in need.

I hope in the New Year to again try and live independently - if we can find a suitable place to live (no easy thing in Cornwall) - and I dare say this will be yet another battle for me to try and win. The last thing anyone who is sick wants or needs is to have to try and justify their needs - but that's the system and I don't think it is any different in any country in the entire world. Is it right? No.

As I have said before - when at my worst and living alone - I was unable to cope and that included being able to arrange for let alone 'negotiate' any provision or indeed ring for a doctor. Indeed on several occasions - without wishing to overly strum the violins - my distant parents needed to liaise with emergency services and then with the hospital.

UKXMRV - Barb might appreciate a date on the Gibson report and a link I would think seeing as she's a yankie-doodle-dandy And I don't know when they video was made - but is it still relevant?