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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Government Coallition - Incapacity Benefit.



I just hope the XMRV business gets sorted before they start reassessing us all, they want to get everyone off benefits so I've no idea what stance they'll take in regards to ME.


Ramblings for people worried about getting benefits taken away in the UK.

I think politicians have a very short memory, hence the phrase 'a week is a long time in politics'. (Sorry for that party political broadcast from statetheobvious.com, sponsored by Ulax weed killer).

Now I would imagine the whole point of the UK's PACE & FINE CFS trials is to not only usher in more CBT (very cheap, no causal model for ME needed), but to also cut benefit payments due to 'evidenced based research' proving that 'CFS/ME' patients can be 'rehabilitated' into society. Personally I would only worry in 2012, but then as it may be the end of the world there will be little to worry about, and certainly not benefits.

The problem is the NICE guidelines on CFS/ME preventing CFS/ME patients having a TILT test in hospital. This is why they were created, to STOP YOU knowing what it wrong with you. Few patients know about a TILT test or can prove they have signs of organic disease, namely autonomic nervous system dysfunction. Now if they did, benefits could not be cut. Hence the urgency and rushing of pro-psychiatric NICE guidelines that are so appaling they were challenged in court.

Hence governments need psychiatrists to 'prove' CFS/ME is a mental illness (when you have ME) to prevent you getting tested to show nerve/immune/vascular damage. Once you have the ficticious illness label of 'CFS/ME' you can then be labelled as having dog whistling syndrome too. (A rare form of psychosis where the owner goes for a walk with their pet dog, and soon ends up shuffling around the stumps of trees, urinating without warning and then running off into the woods - whilst the dog whistles furiously, before dialing for help and frantically alerting the neighbours).

According to the belief system of Psychiatry, this afliction /'CFS/ME'/ME are the same. Remember Wessely's quote? 'ME is a belief, the belief you have ME''. (We all know ME is a neuro disease classified since 1969).

Meanwhile in America, land of the sensible we have Professor Nancy Klimas revealing there is neuro inflammation in American CFS patients, (not UK 'CFS/ME or dog whilsting syndrome) but American CFS. Importantly, if CFS patients have neuro inflammation then by definition with other endocrine and immune system hallmarks - they actually have ME (Myalgic Encephalomyelitis) and thus a classified neurological disease. Hence, 'real' CFS in the USA was always 'real' ME. We all knew that, it was just hidden without bio-medical research.

So people in the UK can attempt to cut benefits all they like, but now we have scientific proof of inflammatory brain cytokines in people with American CFS and ME over here. Part of the word ME means, inflammation of brain/spinal cord after all. :(

All patients in the UK need, is to have this test (inflammatory brain cytokines) and Bob's your Uncle and Fanny's your Aunt. Evidence of neuro disease. Neuro diseases caused by inflammatory immune processes (worsened by exercise) will not be made better by exercise or CBT. Period. Never. So the DWP advise to cut your benefits is erroneous, and actually harmful to you because it's based on false information.

So as horrible as these benefit people are, being advised by Professor Peter White (Psychiatrist) who is advisor to the Department of Work of Pensions (DWP) who decide who gets benefits or not - the science is there (there as in the United States), but it can be here (United Kingdom) by getting the correct blood tests done, and escaping from 'CFS/ME' which in the UK, (unlike in America) means 'Long Term Tiredness', or dog whistling syndrome.

Well why am I so bold in my assumptions? Because this (this as in 'escape' 'CFS/ME') is exactly what I did, the second I was diagnosed with Dysautonomia/POTS - I was (by default) no longer a person with 'CFS/ME' and thus a person with long term tiredness according to the Department of Health's NHS. Why have I jumped from brain inflammation to Dysautonomia? Because I cannot prove brain inflammation yet, so I'll stick to neuro dysfunction of organic cause - which is Dysautonomia - enough to get disablity benefits maintained. BINGO!!!! Note neuro inflammation probably causes Dysautonomia in some cases.

And this is why, patients must push for and obtain a neurological, and/or neuro immune diagnosis to escape the psychiatric profession's giant fishing net that scoops you up and wraps you up in newspaper ready to be eaten by corporations, civil servants, and 'medical research councils' with a fixed agenda to eat you up for breakfast!!! :eek:

The simple way to be able to escape NHS 'branding' of non-disease 'CFS/ME', is to prove disease and you prove disease by never ever for one second laying down and accepting the label 'CFS/ME' - when it means nothing at all. You must take the initiative.

So concentrate on ignorning people who plan your destruction (or currently maintain it) and focus on learning about disease markers, and disease signs - e.g. Dysautonomia, and thinking OK then, I'll get a diagnosis (if possible) and no longer have to be worried every year you may get your benefits cut.

I've got mine indefinately, simply because 'CFS/ME' is just one diagnosis of many I've got, yet not the only one. You can get a diagnosis of Dysautonomia also and I'd strongly advise it if significantly disabled and you have the classic symptoms of orthostatic intolerance which, according to one study is 80 - 90% of patients with American CFS - which includes most people (not all) with UK 'CFS/ME'.

UK recipie sprinkled with American research flavourings:
(Americans discovered POTS, a form of Dysautonomia and actively research it).
(UK NHS refuses funding for POTS research in 'CFS/ME' due to the Medical Research Council). FACT.

1) NHS Letter of referal to specialist in Dysautonomia/Syncope from your GP or other specialist.
2) Tests at the NHS centre this Dysautonomia/Syncope person works at.
3) NEW additional diagnosis to 'CFS/ME' now in medical records prove organic disabilty reasons.
4) The DWP no longer see you as 'just' mentally ill with 'CFS/ME'.
5) NICE guidelines or PACE/FINE or Wessely or whoever, can't take away your additional diagnosis of neurological origin. And thus it is likely (with support and advice) you won't be stressed every year of not being able to get disablity benefit payments.


Fine, thank you
I thought I read somewhere (in the run-up to the election) that the Conservatives wanted to change the system so that the people who deal with IB only get a bonus for chucking someone off it if they manage to get into work and, six months later, that person hasn't collapsed and is sustainably holding down the job. An improvement on the current system where apparently you just get rewarded for chucking people off IB, though still plenty of room for bad things (e.g. struggling, desperate person sleeping 18 hrs/day to hold down the job).

No clue about my source but I thought it was an improvement, if true.