Why everyone with Myalgic Encephalomyelitis needs a computer

This video explains some of the reasons why everyone with Myalgic Encephalomyelitis needs a computer (with access to the internet).

These comments would all no doubt apply equally to people with comparable illnesses to M.E., both politically and medically.

a. Medically: Where a large percentage of patients are completely (or for significant periods of time) housebound and/or bedbound or otherwise limited with communication. (For example; if they are unable to have visitors, use the phone or speak: often/for very long at a time/without significant relapse afterward/without great difficulty or at all; as are many people with M.E.)

b. Politically: Where the vast majority of information produced about the illness is so inaccurate and misleading as to amount to nothing less than propaganda; thanks to the involvement of vested interest groups, including the government (and with full support from government and the media -- with some notable exceptions in the case of the media).


Myalgic Encephalomyelitis is not the same thing as 'CFS' (or ME/CFS, CFS/ME, ME-CFS, CFIDS or Myalgic 'Encephalopathy').

The bogus disease category of 'CFS' has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes for the benefit of insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

This pretence of ignorance about M.E. -- and that M.E. and CFS are the same -- (particularly by government) has had devastating consequences for people with M.E. Many people with M.E. are subjected to medical abuse (and abuse by misinformed family members), denied even basic medical care and may also be subjected to inappropriate 'treatments' which are at best useless and at worst extremely harmful (people have been left wheelchair or bedbound afterward for years or DECADES, or in cardiac care units) or even fatal for people with M.E. These inappropriate interventions are the actual reason that so many people with M.E. are so severely affected in the first place.

The decades of systemic abuse and neglect of the million or more children and adults with M.E. worldwide has to stop. It is grossly unscientific, unethical and inhuman.

While there IS a lot of good information available about M.E. offline, it is very often only online that people with M.E. (and the parents of children with M.E.) learn of its existence.

For so many people with M.E., the internet is not just a vital source of legitimate political and medical information about their illness; but it often provides their only source of support as well, and/or even their primary (or virtually only) method of communication.

(If I were well enough, I would start a charity aimed at getting second-hand computers to M.E. sufferers who cannot afford them; particularly the housebound and those who cannot communicate for very long any other way.)

For more information on all aspects of M.E. see:

http://www.ahummingbirdsguide.com/whatisme.htm

Category:

News & Politics

Tags:

• Myalgic
• Encephalomyelitis
• CFS
• CFIDS
• CFS/ME
• ME/CFS
• activism
• advocacy
• severe

[ZacharyMoonlight]

Wow, I had no idea other people had the sleep paralysis too - I always worry that if I can't get moving to get my breathing going again, I will actually suffocate. Both my medical family and doctors simply dismiss this. It's really frustrating when it takes hours of your sleep away, when sleeping is difficult as it is. And I'm also being made to take antidepressants and do exercise, which is really making me worse. Don't know how to convince them otherwise.

Thanks for this video, keep it up x

[AHummingbirdsGuide]

@ZacharyMoonlight I hope you can find a way to stop being forced into 'treatments' that make you sicker and are totally inappropriate...bad enough tio have no proper treatment but to have to face this as well. It's so sad...and often when you are made much sicker they see tey were wrong and are so so sorry...but is too late then often, so hope you can convince then soon to stop all this nonsense!

[Megan1710]

How is M.E. verifiable by scientific testing, at this point in time?

[AHummingbirdsGuide]

By MRI and SPECT brain scans, holter monitors, tilt table testing, blood tests of the immune system and so on.

I can't post links here, but see 'Testing for ME' on the HFME site, it's in the Navbar on the left. Can't miss it. Full referenced and detailed.

:)

Don't belive anyone who says ME can't be etsted for, it can, and even more easily and reliably than diseases like MS! It is true you can't test for chronic fatigue however!

[kimmytheechidna]

If it wasn't for my computer, I would go insane from loneliness due to being too ill to socialize normally.

[AHummingbirdsGuide]

Me too:)

[MollyMate1]

Until this week I had no idea that ME could be so debilitating. Please all of you, don 't give up. Rearch for a cure could happen any time.

[scooby22290]

hi,i suffer with sleep paralysis to.this is such a scary thing.i thought i was the only one to suffer from this to,so you have opened my eyes.thankyou for sharing this information with us.take care now...

[don4121]

i too had sleep paralysis in the early years of me, it is one of the most scarry symptoms of our dissorder

if anyone wants info please send me an e-mail and i will help you . jodi you are our hero keep up the good work !!!

[livingfaith17]

Really good video