Research 1st
Severe ME, POTS & MCAS.
- Messages
- 768
Hello everyone.
Due to recent developments of the forced release of the PACE data by QMUL I intend to take matters further legally, to protect myself from further harm from the NHS approving a therapy that has no evidence base and is thus unsafe for clients with organic causes of their ME CFS.
Ideally, this would not be necessary. The UK NHS would have withdrawn CBT/GET, via a NICE ruling, but we know they won't as then it exposes the fact there is no treatment at all for ME CFS in the UK, a somewhat embarrassing situation that would then retrospectively admit, patients have been neglected for decades using harmful therapies due to a massive lack of biomedical research funding (funding there was, was siphoned off largely by psychiatry).
Sadly, CBT/GET will stay. If under pressure as to why, the NHS can blame NICE and NICE can blame the DOH the DOH can blame the MRC. Of note, the DOH, MRC, DWP were all responsible for PACE. It is 'their' brainchild. Nothing will change as it cannot do, due to the consequences. (Changing the medical advice, admits they were wrong, and victims will demand compensation).
Possible roads to legal action against Health Agencies who back CBT/GET, proven to have a null effect.
Potentially this could be groups of harmed patients and with the help of a legal team. I cannot do this on my own, although I have an unusual amount of abnormal tests, which puts me in a good position to trounce CBT/GET as an effective management 'tool', most don't. I need to find two types of patients discussed below. 1) Physically harmed, and 2) Mentally harmed - or both.
What I need is other people to come together, to form a group. In law, although the term is no largely defunct we refer to this as a ''class action''.
Before I start canvasing support to inform a legal team to consider the options we have against the fraudulent medical therapy (CBT/GET) used in the UK and around the world, of which I was assured (in writing) was effective by various specialists I have met I wanted to do a brief poll here to see your potential experiences, if they differ, if they are similar.
1 person might respond favorably, 20 might. What we need, ideally is 100's of people, from all over the world who can prove in a court of law, that they were harmed physically or psychologically, on a personal level, due to their contact with doctors who followed the Biological Psycho Social perspective of CFS, commonly known by the acronym as 'BPS'. The birthplace of this is the UK, known as the 'Wessely School',
The questions I have made on the poll are obviously examples and not specific, and you can answer the poll in the box or add your own ideas and answers as well.
As sad as it is, (you have all been harmed as no medical research has taken place due to psychiatry 'owning' ME CFS), in medical law, you need evidence of personal injury to start a case though.
I have been down this route before with ME in the UK, and have a basic idea of the system having failed before hand. I failed, as then I had little knowledge and was trying to 'prove' ME wasn't CFS.
Times have changed. Now I am proving that CBT GET doesn't work for organic states of ME CFS. Now there is evidence for this.
The two types of people that are useful to make a successful group of sufferers claim are mostly:
Physical disease evidence you have in your possession not explained by ''unexplained chronic fatigue'' (the requirement of CFS) and in which CBT/GET would be useless. Ideally I am looking for people who are research savvy, test obsessed, and have a great archive of appalling medical health!
Mental health issues that came on after the diagnosis, due to bad treatment:
People who can prove beyond all reasonable doubt, they have suffered mental harms because of doctors ignoring them (neglect) and making prejudiced decisions against them (misdiagnosis), are also useful to our cause. This would be bolstered by an 'experience', that triggered a diagnosed mental health condition.
E.g. Your experience of Hospital A, lead to the development of PTSD
E.g. Your experience of GP b, lead to the development of major depression.
The physical neglect often leads to the mental health problems.
Lets see where we get, as a basic scoping exercise.
Staying safe online when discussing personal medical health and legal matters pertaining to your health:
Always go offline, to discuss your health problems, with legal professionals.
Professional legal representatives have to be accountable for professional behavior and must keep your information confidential.
Due to recent developments of the forced release of the PACE data by QMUL I intend to take matters further legally, to protect myself from further harm from the NHS approving a therapy that has no evidence base and is thus unsafe for clients with organic causes of their ME CFS.
Ideally, this would not be necessary. The UK NHS would have withdrawn CBT/GET, via a NICE ruling, but we know they won't as then it exposes the fact there is no treatment at all for ME CFS in the UK, a somewhat embarrassing situation that would then retrospectively admit, patients have been neglected for decades using harmful therapies due to a massive lack of biomedical research funding (funding there was, was siphoned off largely by psychiatry).
Sadly, CBT/GET will stay. If under pressure as to why, the NHS can blame NICE and NICE can blame the DOH the DOH can blame the MRC. Of note, the DOH, MRC, DWP were all responsible for PACE. It is 'their' brainchild. Nothing will change as it cannot do, due to the consequences. (Changing the medical advice, admits they were wrong, and victims will demand compensation).
Possible roads to legal action against Health Agencies who back CBT/GET, proven to have a null effect.
Potentially this could be groups of harmed patients and with the help of a legal team. I cannot do this on my own, although I have an unusual amount of abnormal tests, which puts me in a good position to trounce CBT/GET as an effective management 'tool', most don't. I need to find two types of patients discussed below. 1) Physically harmed, and 2) Mentally harmed - or both.
What I need is other people to come together, to form a group. In law, although the term is no largely defunct we refer to this as a ''class action''.
Before I start canvasing support to inform a legal team to consider the options we have against the fraudulent medical therapy (CBT/GET) used in the UK and around the world, of which I was assured (in writing) was effective by various specialists I have met I wanted to do a brief poll here to see your potential experiences, if they differ, if they are similar.
1 person might respond favorably, 20 might. What we need, ideally is 100's of people, from all over the world who can prove in a court of law, that they were harmed physically or psychologically, on a personal level, due to their contact with doctors who followed the Biological Psycho Social perspective of CFS, commonly known by the acronym as 'BPS'. The birthplace of this is the UK, known as the 'Wessely School',
The questions I have made on the poll are obviously examples and not specific, and you can answer the poll in the box or add your own ideas and answers as well.
As sad as it is, (you have all been harmed as no medical research has taken place due to psychiatry 'owning' ME CFS), in medical law, you need evidence of personal injury to start a case though.
I have been down this route before with ME in the UK, and have a basic idea of the system having failed before hand. I failed, as then I had little knowledge and was trying to 'prove' ME wasn't CFS.
Times have changed. Now I am proving that CBT GET doesn't work for organic states of ME CFS. Now there is evidence for this.
The two types of people that are useful to make a successful group of sufferers claim are mostly:
Physical disease evidence you have in your possession not explained by ''unexplained chronic fatigue'' (the requirement of CFS) and in which CBT/GET would be useless. Ideally I am looking for people who are research savvy, test obsessed, and have a great archive of appalling medical health!
Mental health issues that came on after the diagnosis, due to bad treatment:
People who can prove beyond all reasonable doubt, they have suffered mental harms because of doctors ignoring them (neglect) and making prejudiced decisions against them (misdiagnosis), are also useful to our cause. This would be bolstered by an 'experience', that triggered a diagnosed mental health condition.
E.g. Your experience of Hospital A, lead to the development of PTSD
E.g. Your experience of GP b, lead to the development of major depression.
The physical neglect often leads to the mental health problems.
Lets see where we get, as a basic scoping exercise.
Staying safe online when discussing personal medical health and legal matters pertaining to your health:
Always go offline, to discuss your health problems, with legal professionals.
Professional legal representatives have to be accountable for professional behavior and must keep your information confidential.