1. Stop calling it an invisible disease! [It] is bad PR.
2. “Don’t give up. Don’t give up, don’t give up, don’t give up.”
I don't think it is. When the tests that a GP will run don't show anything abnormal, as Ron himself pointed out at the IiME conference, then it is effectively an invisible disease and should be described as one.Why is calling it an invisible disease bad PR?
List of SOME Invisible Disabilities
- ADHD
- Anxiety disorders
- Allergies
- Arachnoiditis
- Asperger Syndrome
- Asthma
- Autism
- Bipolar disorder
- Brain injuries
- Charcot-Marie-Tooth disease
- Chronic fatigue syndrome
- Chronic pain
- Circadian rhythm sleep disorders
- Coeliac Disease
- Crohn's disease
- Depression
- Diabetes
- Ehlers Danlos Syndrome
- Endometreosis
- Epilepsy
- Fetal Alcohol Spectrum Disorder(FASD)
- Fibromyalgia
- Food allergies
- Fructose malabsorption
- Hereditary Fructose Intolerance
- Hyperhidrosis
- Hypoglycemia
- Inflammatory bowel disease
- Interstitial cystitis
- Irritable Bowel Syndrome
- Lactose Intolerance
- Lupus
- Lyme Disease
- Major depression
- Metabolic syndrome
- Migraines
- Multiple Sclerosis
- Multiple Chemical Sensitivity
- Myasthenia Gravis
- Narcolepsy
- Personality disorders
- Primary immunodeficiency
- Psychiatric disabilities
- Reflex Sympathetic Dystrophy
- Repetitive stress injuries
- Rheumatoid arthritis
- Schnitzler's Syndrome
- Schizophrenia
- Scleroderma
- Sjögren's Syndrome
- Trigeminal Neuralgia
- Spinal Disorders
- Temporomandibular joint disorder
- Transverse Myelitis
- Ulcerative Colitis
Yes, exactly. We also are not invisible. Ignored, but not invisible.He's saying that ME does have clear signs. It is only invisible if you don't care to look.
I think another point is the socially acceptable discrimination that is metered out to people with invisible illnesses because people believe it is excusable.I’m happy with “can’ be an invisible illness l I just get irritated when people assert it is and we Look fine. Obviously the severely ill sometimes DO look exactly that so to say “but you look fine” would be silly but even when mild-moderate the Main reason my family believed me was because of the ghastly facial pallor Ramsey wrote of which was my typical shade, more so when I exerted, if I said I’m starting to feel ill I’d visibly be draining too and people COULD see it. I know this isn’t everybody’s experience by any means but neither is “I look so well but feel so ill” either which is sometimes put about as the face of our illness invisible.
I see your point... but I have an issue with OMF referring to Ron Davis as 'Superman' (if there was indeed OMF involvement with this post - but it's hard to imagine that there wasn't).I am glad that Whitney is having some relief and ability to communicate from his occasional doses of ativan. But given that he is, as I understand it, still only able to communicate with signs and unable to speak, I would assume he has been told this information and given his approval to the message, rather than actually putting all the detail of it into words himself. I think he and his sister are working on his messages together.
Does that make it a message from him? I think it does, and it probably helps Whitney feel closer to his father, and more in touch with the ME community and that he is contributing in the only way he can. I would not want to criticise that. Whether it is a good way for Ron to communicate research information is for him to decide.
I agree. I would also be concerned with accuracy - Whitney is still(?) severely ill, and those of us less ill than him can struggle to comprehend complex issues, let alone communicate them accurately to a wider audience. Until it comes out as an official OMF update, I'm treating this as Whitney's interpretation of what his Dad may, or may not, have said to him.Sorry to be cynical, but why is Whitney being used to convey this information? He says it's "top secret inside info", but I highly doubt he is sharing it without Ron's permission. So why is OMF using Whitney to communicate this rather than doing it themselves?