Severe Myalgic Encephalomyelitis

[Arianne]

Research for the forgotten meresearch.org.uk/our-resea...

[Ian123]

Leonard Jason is researching mortality rates, that this along with care and numbers of severe are not known after so much time speaks of the institutional neglect that has been used worldwide.

The FINE trial ncbi.nlm.nih.gov/pmc/articl... using the discredited Oxford criteria wasted tax payers money and stifled biomedical research.

[Peter-J in reply to Ian123]

Dr. Jason's team did an analysis of the National CFIDS Foundation's ME/CFS patient Memorial List ncf-net.org/memorial.htm

Presents their findings name-us.org/ResearchPages/R...

[slowmotion]

10 or 25% is a wild guess if they were honest any number when they do not know because they dont care.

[Stiller]

Comes a fear if your neglected you will know more than the doctor

btckstorage.blob.core.windo... Be your very own expert stronger by staying living.

[budgiefriend]

I am really struggling with this problem at the moment. Wouldn't wish it on anyone.... being thought impertinent and rude because I ask a doctor to treat me according to scientific and clinical research findings instead of based on unsubstantiated psychiatric/psychological THEORIES has got me a letter inviting me to find another surgery and doctor. So much for trying to be assertive with regard to my deteriorating health.

[Ian123 in reply to budgiefriend]

The service provision nationally is covered by this research bmjopen.bmj.com/content/4/6... suggesting you are not alone experiencing difficulties accessing relevant healthcare.

Even the psychiatric/psychological dominated NICE guidelines are forsaken when neglect is the cheapest option as the cutbacks in NHS services, will affect the areas with least support first.

[budgiefriend in reply to Ian123]

The Countess of Mar made a very clear and to the point statement in a recent address:

"Very unfortunately, once a person, be they child or adult, has the ME label all support and assistance from the medical profession and social services seem to vanish into thin air. Despite the World Health Organisation classification of CFS/ME as a neurological condition under ICD 10 G93.3 and this classification being accepted by Ministers of both the Department of Health and the Department for Work and Pensions; despite major reports, one by the Chief Medical Officers working group on CFS/ME in 2002 and two others by the All Party Parliamentary Group on ME in 2006 and 2010, all of which recognise the severe impact that this disease can have on many patients’ lives, far too many of those professionals treating and caring for people with ME have not received the message. The CMO Report mentions that “The disbelief and controversy over CFS/ME that exists within the professions has done nothing to dispel public disbelief in the existence of such a seemingly varied and inconsistent illness.” Despite all the fine words of Ministers and report writers, I repeatedly ask myself why it is that the recognition and treatment of this illness has remained in the doldrums for so long."

meassociation.org.uk/2015/0...

[Ian123 in reply to budgiefriend]

From the ME Association list of specialist care provision meassociation.org.uk/nhs-sp... the amount of psychiatrists, most notably P White and T Chalder that are prominent members of the Wessely school of illness behaviour treatment leading services, allied with the number of occupational therapists - how can there be so few doctors for a neurological condition.

[Stiller in reply to budgiefriend]

Been there with my own local doctor that found treating me a hard task.

I told him he had the easy part of the bargain living with this monkey on your back was harder than chasing the dammed thing.

A local politician speaking for you when theyre all shaking hands and kissing babies is only me thinking.

[budgiefriend]

I have noticed this as an ongoing theme in more illnesses than ME. And the government are making slurs against and cuts to benefits and services for anyone who can't get a job. I don't know where this leaves us and I feel that we have become disposable, nearly inhuman. Sad situation.

[Peter-J in reply to budgiefriend]

Got some family suffering from the gulf war illness the feds call it medically unexplained when they got sick serving their country riles me some.

[budgiefriend in reply to Peter-J]

I can sure understand your feeling about that. It would make me very upset. hugs.

[Ian123 in reply to Peter-J]

The same psycho babble school was used on gulf war syndrome in the UK as were already muddying the waters with chronic fatigue as a psychiatric condition. The stress of combat, not inoculation for biological war, depleted uranium munitions, or burning pits was the cause of mistaken illness beliefs. Some of the same treatment that was curing chronic fatigue syndrome would do the same for gulf war syndrome that did not exist either. Follows the same pattern as the Christmas Island nuclear bomb tests in 1957, deny everything until so long after the event compensation or care costs are very small.

The gulf war gave us this generations "agent orange" in a changing world some things remain the same, government supported neglect and abuse of those that are ill.