ME and mine

One of the really BIG problems of having lifelong Myalgic Encephalomyelitis is the misinformation generated widely in societies about chronic fatigue. Nowadays, the popularisation of the dustbin diagnosis of Chronic Fatigue Syndrome (as it was wellknown by in medical circles prior to the formalisation of the CFS strategy) is having devastating negative impacts on people with all kinds of specific medical conditions including cancers, HIV, multiple sclerosis, heart disorders, strokes – you name it and I’d bet you’d find someone denied a true clinical diagnosis and necessary treatment and support services under this bizarre outcome of CFS Strategy misimplementation.

Chronic fatigue is a general population issue and can affect anyone for varying reasons. Post-viral fatigue, similarly. Neither of these conditions of general temporary ill health are ‘a syndrome’. Neither CFS nor PVFS are necessarily M.E. [I experience PVFS as well as my generalised M.E. type health states.]

A smokescreen has been created with very widespread CFS propoganda by swagbaggers and swipesters – even the M.E. charities are forced to play along with furthering the CFS field in order to sustain their funding revenue.

M.E. patients are denied support as a result whilst the general public assume we receive support through CFS implementations. Nobody bothers to go more than two or three clicks to check information enough and so dole out repeated nonsense and assume they know because so-and-so-(web)info-states…

Nobody much reads the entire NICE2007 guidelines to understand the breadth of clinical knowledge, the limitations of NHS provision, the patient expertise and the knowledge of clinical experts. Propoganda still leads us to believe ‘doctors cannot diagnose this’!

The NICE2007 guidelines very clearly state that anyone diagnosed with M.E. or any other lifelong disabling illness cannot be diagnosed with Chronic Fatigue Syndrome. This guidance was due to have been updated in 2014, but I didn’t notice any consultation, nor any news of it, but also haven’t checked yet. There was no such diagnostic label as M.E./C.F.S. in the 2007 guidance but C.F.S/M.E. is diagnosed after an initial Chronic Fatigue Syndrome referral is confirmed as illness with Myalgic Encephalomyelitis.

This is a very complex issue that I didn’t wish to write about here today. To an extent I just have! [Only for interference with my use of my blog that distracted me away from my original post intention!]

It’s incredibly annoying, having a confirmed clinical diagnosis of Myalgic Encephalomyelitis, with devastating lifelong disabling impacts, being expected to meet a class-based stereotype of what my human condition should look like. It’s also annoying when government money intended to help patients is usurped for job-creation schemes for psychological based therapies to the detriment of biomedical research. of course, there are more annoying things, and for us all!

Scientific findings since 1984 have been locked away under the OSA, allegedly – possibly along with my own genetic data from my original severe phase as a teenager and possibly those of other patients.

Books like the one I was reading in the photo that refused to upload to my media library at my other blog, lumping causes of ‘fatigue’ under ’emotional and behavioural problems’, trivialising even general fatigue, and ignoring so many physiological factors, as if you can think yourself out of fatigue states, only adds to those things that can make therapies more harmful for the patient.


2017 and the Monthly Look Ahead!


click to visit Coolbeans MonthlyLookAhead post

I’m late again! “Better late than never!” tends to be my recurring mantra, for quite some time now… I could add to my usual excuse of ongoing ill health to those frustrating tech difficulties that I’ve wasted so much time on lately! I could have set up my new toy, but want to be awake and concentrating well when I do! I set this thing up in a fuzzy haze and it hasn’t helped – but then Windows10 is less clear than 98/XP were for administrative and security settings and seems to want to auto-control things. Probably just me not really sussing it better yet.

Getting back to more blogging interaction!

My blogs are in quite a shoddy mess, and need some #blogging101 refreshing! Underway, whenever…

I managed a little blog reading and interaction recently from my now aging mobile phone – but isn’t technology made so quickly obsolete these days! I’m very much regretting not Continue reading “2017 and the Monthly Look Ahead!”

Writing365 #3 thrown onto my soapbox!

(Download the WordPress ebook of writing prompts here)

A cause to throw yourself behind? There are so many potential good causes and currently I’d need more than just someone taking care of my day to day responsibilities… but assuming a magic wand and full fitness…

I’d like there to be a revolution! So, to join a citizen’s revolt to overthrow the British government including the tory-soundalike-labourats. Maybe then I’d live to see democratic reform in my country, with human rights upheld and equality afforded to all. An end to lip-serviced-lie-driven politics would be very welcome. In my ideal new world politicians would receive a living wage for their work for the state rather than the fat cat salaries they receive currently. The same would be apportioned to the GPs whose work comprises of being drug-pushing computer clerks preventing access to referrals for diagnostic investigation and medical services to any of their patients lacking the clout of lawyers services.

So something more sensible and appropriate to a person of my age than joining a revolution?

… I’d maybe join or seek to establish a campaigning and supportive organisation to provide a safety net for vulnerable people caused deprivation and harm by the UK state’s implementation of the Welfare Reform Act 2012 (reform by way of an act of welfare repeal).

It isn’t always the case that when deprived of welfare benefits that there is access to food bank help, although that seems to be the popular belief. In some cases there may be local food bank facilities but a person in need has to have a referral from a doctor or other supporting professional (or the police if involved in crime). Not all doctors will provide the means to access food banks to their patients – it’s an added bureaucratic demand some see as not part of their healthcare responsibilities. Or they might save their referrals for people with children only. For some people, even with the provision of a referral to a food bank service they may still lack the ability to reach that service and obtain food.

Another popular misconception is that since DWP provision of Social Fund payments was withdrawn Local Authorities (councils) now provide crisis help to people in need. The reality is a very strange set-up given the circumstances of welfare reform since the 2012 legislation. Also the government funding to local authorities for hardship assistance isn’t ring-fenced solely for that purpose. Local Authorities are able to use that funding for other purposes. Available public information clearly demonstrates that large amounts of such funding is not being distributed to such people in need as is intended.

While claimants who are victims of the current sanctions regime may have some limited access to hardship help, there is the anomaly of ESA claimants not actually officially sanctioned but having their ESA claims withdrawn under the declaration of being found fit to work. The process of challenging such decisions isn’t always straightforward and may not be achievable by a person in ill health.

In some circumstances since benefit rules changes, a person disabled by ill health but found fit to work who seeks to appeal their benefit decision will be left with no income during their appeal which can take several months or more. In theory – and indeed according to legislation – provision can be made for such a person to claim Jobseeker’s Allowance under ‘special rules’. However, in practice, claimants first have to sign as fit and available for 35hours work a week and may then be expected to meet all the same conditionality of any other jobseeker. They then of course will be either refused benefit for still being unfit to meet conditionality while considered fit to work and ineligible for ESA or receive limited benefit under sanctions policy for succeeding in a claim but failing to meet the demands of conditionality.

Local Authority hardship help can only be provided to a person who has an open claim for benefit but is awaiting payment or sanctioned.  A person deprived of income, making a JSA or ESA claim that’s not yet processed and awaiting payment can receive help in the form of a voucher for prepayment gas and electricity credit (only available if they have a prepayment meter and it’s no help if they’ve gone into standing charge arrears already on their meter). A prepaid card can be given for food shopping – assuming fitness and ability for shopping for food, without providing help for travel and no way of using that pre-paid card for obtaining online orders for delivery of shopping. That help is only available for a maximum of three weeks assuming income will then be secured via payment of that new claim. A person with no claim status, with no savings and lacking independent means cannot receive hardship help from their Local Authority.

However to be considered in emergency need a person has to be able to reach their Local Authority’s office within a couple of days of that provision being granted. A disabled person with unreliable health too ill to travel to fetch that help (or any person with no bus fare or other means of transport unable to walk perhaps several miles) will then be decided as not in emergency need for not getting there quick enough unless they have anyone else to go and fetch that help for them, within that timescale – not everyone has someone else able to provide such help.

During such times of nil benefit status access to prescription medicines is prevented unless having the means to pay the prescription fee and dental treatment cannot be obtained without means of payment. Travelling to visit a GP or support / advice service might not be possible unless fit to walk far enough to reach one. For anyone deprived of enough food or heating with the additional stress of such circumstances these issues compound the problems. Letters of medical support are often demanded by the DWP regardless of prior information obtained by the DWP or medical certification as unfit with diagnosis. Many doctors require payment of a fee for letters and at a time of nil income with no savings and most likely very limited borrowing capability being unable to afford the fee for a doctor’s letter results in a DWP decision of failing to provide additional evidence.

There has been a rise in the number of suicides and other causes of winter deaths in recent years. The DWP should be legally obliged to collect data on all types of claimant ‘outcomes’ and to make these publicly available. The government currently refuse to acknowledge responsibility for deaths related to welfare deprivation and delay releasing information.

Another issue is the potential for homelessness and the likelihood of being evicted for rent arrears. Having nil income can mean losing housing benefit. A claimant has to be able to show evidence of borrowing money to live on during periods of nil income or can be assumed to have undeclared means to live and so not receive housing benefit to pay their rent.

Under Universal Credit rules, if ever those policies are fully rolled out nationally as planned, things are only going to get worse for the nation’s poorest, including those employed but unable to work full-time. In the near future anyone working less than 35 hours a week can be expected to meet current jobseeker type conditionality and potential sanctioning of the housing element of Universal Credit that will replace housing benefit. Anyone self-employed and reliant on state help toward basic living and housing costs will find they are assumed to have an income of at least equal to 35hours x minimum wage and may not be eligible for help.

While much in the media focuses on the issues of families with children being hardest hit by welfare reform, the plight of single people or couples without children for whom there is very little provision is ignored.

We had been a country politically driven toward transparency, openness  AND accountability during previous years of Labour government. Now we’re thrusting ever backward in reverse gear to pre-1930s style hierarchies: human rights as a general principle has been abandoned; disability is only recognised and acknowledged for the priveleged few who receive the state disability payment of P.I.P. This is limited to a certain number by way of a fixed level available in the government’s budget for those payments. This means an excess of disabled people – including children – denied not only the financial help they need but also denied their rightful legal status as a person with disabilities and so being denied other provision, services and leniencies or ‘reasonable adjustments’.

The UK Welfare Reform Act 2012 legalises the deprivation and destitution of vulnerable disadvantaged people and penalises the disabled and weak. It’s a document flavoured with Nazi-type bad taste and is sickening – it is very difficult to see how it can possibly be considered ‘legal’.

(This piece of writing is a reflection of personal opinion based on knowledge from direct personal experiences and prior informal research. As an added challenge I should return to this post and cite sources of information etc. Maybe…)