Starting with this searing critique from a member publishing as ‘The Sofa Lady’ ...
How Not to Recover from ME
1.Train GPs to be sceptical about the existence of ME, ensuring that they will be unable to recognise the condition in order to properly diagnose it or if they do, they will:
i) order standard tests which will not identify the illness but will be used to assure the patient that ‘nothing is physically wrong’;
ii) block onward referrals to other services such as domiciliary care or home support which might help;
iii) refuse home visits even when the patient is severely or seriously ill and has no other method of accessing care;
iv) refuse to corroborate the extent of the patient’s condition or significantly under-report it so denying them access to state benefits.
2.Establish a centralised hospital system requiring patients who are already seriously ill and have difficulty travelling, sitting upright or maintaining a conversation to jeopardise or worsen their fragile health by attending outpatient appointments based on lengthy oral histories held at a distance from their home.
3. Make the main referral pathway via an immunologist/infectious diseases consultant who finding no obvious viral trigger for the patient’s symptoms, will resort to psychiatry as the default option.
4. Allow psychiatrists to devise treatments aimed at correcting ‘disordered illness beliefs’ rather than addressing symptoms and insist patients are ‘in denial’ when they attempt to raise legitimate concerns.
5. Ensure that NICE, the National body overseeing clinical
guidance endorses treatment programmes based on CBT & GET which are of no proven benefit to the majority of sufferers.
6. Direct research funding away from biomedical investigation and treatments thus delaying the search for an effective cure for a generation.
7. Set up a benefits system based on exhaustive questionnaires, followed by aggressive and intimidating medical assessments and a stressful appeals procedure. Repeat at frequent intervals. Withdraw funding from welfare officers working for disability charities and remove legal aid from benefits appeals.
8. Restrict disability benefits and abolish the Independent Living Fund intended to allow the severely disabled some semblance of normal life; introduce a bedroom tax so that those who rely on the assistance of a relative or carer overnight are penalised for doing so.
9. Starve Social Services of cash so that their priority becomes supplying justification for the denial of support, particularly to those whose needs are not immediately apparent; devolve the assessment of additional financial support for the most severely disabled to those same local authorities.
10. Ensure that you have a complacent media unwilling to challenge medical orthodoxy and expose the scandal of lost lives. Condone a print media in which the success of columnists is judged by the amount of controversy and hysteria they generate however inaccurate or damaging their views may be/
11. Having failed to offer any treatment or support, blame the patient when they fail to improve.
How fortunate that we do not live in such a society or we’d never recover!
The Sofa Lady
With apologies to that small but valued group of GPs, Consultants and Researchers from whose sympathy and insight into this devastating condition the answers will eventually come.
