The harm done through ignorance.

People diagnosed with Severe ME have to be so careful. It is very hard to find someone who comprehends the risks and dangers of engaging with them, especially because the illness is so hidden, invisible, misunderstood not adequately investigated. 

 Once you reach a certain level of the illness there comes a point beyond which people cannot risk investigations. The danger to your health and life is so immense.

  People need help badly, but it needs to be given in the right way. 

 The harm done through ignorance is indescribable.

Comments

  1. AnonymousMay 19, 2015 at 2:32 AM

    It has been hard for me to explain that an "assessment for services" can make me ill and i am not able to explain myself anyway. I have trouble using phone, answering questions but everyone expects me to speak for myself. I have been ghaving home care for 14 years so there is already information on file. Its just managers getting paid to fill in forms but no-one to take the time to learn about the condition and act accordingly,

    ReplyDelete

Post a Comment

Popular posts from this blog

55 REASONS why NICE must recommend a home visiting, biomedical service, for people with Severe Myalgic Encephalomyelitis

Image
Stonebird
People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means : 1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital.
2. It is extremely difficult to find a knowledgeable GP or consultant .
3. There is little, if any, choice of biomedical ME consultants.
4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal.
5. The system expects people to fit into it and is not very accommodating of those who cannot.
6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Severe ME.
7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the voice of the GP or consultant, let alone all the background noise and any other noise exposure.
8. The impact of noise may cause the person to be damaged and physically harmed for weeks, months, even indefinitely.
9. The impact…
Read more

36 Issues worth pointing out IF A CLINICIAN REFUSES TO “BELIEVE IN ME” OR WRONGLY CONSIDERS IT TO BE A PSYCHIATRIC CONDITION

Image
(This is taken from :
“Severe ME : Notes for Carers” : http://stonebird.co.uk/Notes/index.html)
Many world-class clinicians state that ME is either an infectious disease, or an auto-immune disease as a direct result of infectious insult and recognise ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress.(Maes et al 2014), requiring a skilled biomedical response. ME was recognised as a specific disease entity by The Royal Society of Medicine in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME is currently classified under ICD code G93.3. In the USA, ME ranks second only to HIV as the cause of serious, long-term illness. (Hooper 2004)Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME is fatal. (National CFIDS Foundation). Two reviews have concluded that, “Subs…
Read more

A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH GUIDE FOR ME/CFS

Image
Stonebird :
A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH
GUIDE FOR ME/CFS
Dr Charles Shepherd and Dr Abhijit Chaudhuri

The MEA recently kindly sent me their "Purple Book" for review. It is so good that my well-thumbed copy now occupies a privileged, permanent place beside my computer. I have only had it two days and cannot live without it!

If you have ME then this is a profoundly useful overview of the disease.

If you want to research into or know more about ME, then you will want this treasure trove of information with its stunning coverage of Terminology, Epidemiology and co-morbidity, Medical Research, Management including pharmacological and non-pharmacological treatments, Prognosis, just to name a few of the areas .

The famous Purple Book is a gripping read!
Are you confused about the possible role of Epstein-Barr virus/glandular fever, Parovirus, Post-Poliomyelitis, Giardia, HHV6 in ME ? Here these complex issues are laid out for you in a b…
Read more