Our dear blogger arme.
I recently wrote this in a few groups I belong to, and have had some wonderful responses. So I am sharing it here in the hopes that we, as a group of people suffering from this horrendous illness, can make a wider impact regarding this issue.
Many thanks.
Alison
*Anyone who cares enough to do a tiny effort but hugely important advocacy move, who is on twitter, reply to Stephen fry to tell him the very very basic info that M.E. is not cfs, and that advertising so does so much harm and contributes to the ignorance and pain he is speaking of! And that this kickstarter campaign he is also advertising, is also doing exactly that!
If it's easier, simply retweet my message to him and make sure he sees it, (here http://www.twitlonger.com/show/n_1rrvlot )
It's one click if you do it that way, but one that could make a huge difference!
Be heard people, help be the change we need to see in this. World! What is that other quote about all it takes for evil is for good people to do nothing, super apt here!
Iv attached a link below to his profile, the tweet was 4th down i think? So you don't have to scroll far. (Note, it's now a little further)
I've also attached links to show him to help him learn!
Thank you to those who do this.
I have not been on twitter since my relapse, but made a very important exception for this. His tweets and words reach such a wide audience, hence why it's extra important we help him learn the error of his ways, however well meaning they are.
Truly thank you to anyone here who tries!
Much love
Alison
On behalf of
The Tinkerbelle and Hummingbird M.E. Blog
https://mobile.twitter.com/stephenfry
* Sir, please hear the very very basic info that M.E. is not cfs, and that advertising so does so much harm and contributes to the ignorance and pain you are speaking of! And that this kickstarter campaign you are also advertising, is also doing exactly that!
M.E. is an acquired neurological disease., similar to M.S. - You do not even have to have fatigue as a symptom!
I implore you to read the following articles
http://m.hfme.org/site/webs_41924925/home?url=http%3A%2F%2Fwww.hfme.org%2Fmethemedicalfacts.htm
And
http://m.hfme.org/site/webs_41924925/home?url=http%3A%2F%2Fwww.hfme.org%2Fmeisnot.htm
As well as look at these two informative and factual sites
http://m.hfme.org/site/mobile#3131
And
http://thetinkerbelleandhummingbirdmeblog.blogspot.co.uk/?m=1
Your tweets and words reach such a wide audience, hence why it's extra important we help you learn the error of your ways, however well meaning they are.
I know you are an exceptionally busy man, but please, your taking moments to read the above could help literally thousands and thousands of people.
I say all this with kindness and huge hopes.
Please contact me if you would like to discuss this further or if i can help in any way.
With gratitude, Alison Bell, severe sufferer and advocate, uk. *
https://mobile.twitter.com/stephenfry
12 comments:
Hi, I was so pleased to find this blog yesterday! I am an ME sufferer and have found the info on the hfme and hhhummingbirds sites incredibly helpful and invaluable, so a huge thank you! Jodi, I cannot begin to imagine the huge effort that writing those sites must have cost you. Thank you so, so much.
I totally agree that ME and CFS are NOT the same. And I want to find ways to help raise awareness about this disease. I'm not on twitter but would be willing to sign up if someone could help my addled brain work out how to do it!
However I do want to ask (for my own education, and because my brain is really slow today so I totally know that I may be missing something!!) what is your issue with Steven Fry's tweet (I googled it and just found him referring to is as ME, not as CFS), and the 'canary in a coalmine' film that the kickstarter campaign is in aid of? I watched the video linked to in Steven Fry's tweet, and it even mentioned CFS as being a made up waste basket diagnosis. But I appreciate that I may well be missing something, so please could you explain what you have an issue with? Many thanks :-)
Dear Rachel
Hi ma'am, welcome to our community!
Im happy to talk/discuss the issue above, but maybe best to do via email so we can talk properly, my email is contactalisonLouisebell@gmail.com
Once again, welcome.
Much love
Alison
God bless
Thank you so much Alison, I'll send you an email :-)
Hi, I'm confused also, I felt Canary in a Coalmine was also true to ME definition as was Stephen Fry. Infact I supported the kickstarter. Would love your insights as to why you feel they are CFSers. x
Hi, I'm confused also, I felt Canary in a Coalmine was also true to ME definition as was Stephen Fry. Infact I supported the kickstarter. Would love your insights as to why you feel they are CFSers. x
Hi ma'am.
Lovely to speak to you.
Im very happy to chat about this., email me if you still wish to.
The kickstarter is very much cfs only. Nothing to do with M.E. Which is a true shame. And is very damaging to us all Im afraid.
Much love
Alison
God bless x x
We can email if you like, but I am equally happy to chat here x
Canary in a Coal Mine - what can I say! (Sigh). Firstly, the filming was atrocious (more on that later). Cutting to old black and white film clips, which had no connection to M.E. whatsoever, only served to present a message of confusion. This was reflected throughout the whole film trailer. Not one thing presented in this film had anything to do with Myalgic Encephalomyelitis.
As the carer/mum of an adult daughter with profound severe Myalgic Encephalomyelitis, I am greatly saddened by Canary in a Coal Mine. Instead of giving hope to M.E. patients and their carers, it smothered the truth and hope along with it.
My sincere apologies if this response appears to be blunt but we just do not have the time or resources to continually keep sifting the mass of misinformation (however well meaning) from the truth. This snowballing misinformation buries the vital work done by true M.E experts such as Dr Elizabeth Dowsett and Dr Byron Hyde (and their mentors, Ramsay and Richardson). We cannot allow their vast knowledge and research to be buried, to be ignored. The world needs truthful information.
Canary in a Coal Mine is a film which promotes CFS.
Its film makers describe it as “A film about life with M.E., the most prevalent and devastating disease your doctor has never heard of.” That's the first inaccuracy before even watching the film. Myalgic Encephalomyelitis is not a common disease. However, CFS is a commonly handed out diagnosis. Unfortunately, M.E. patients get caught up in those numbers so people think it is more prevalent than it is. It's probably about as prevalent as M.S.
Continued >>
This film is not about Myalgic Encephalomyelitis. Here's why.
Firstly, Dr Enlander is a CFS (not M.E.) doctor. If you need proof, check out his Chronic Fatigue website which states, “Chronic Fatigue Syndrome, or CFS, is a debilitating and complex disorder characterised by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity...The cause or causes of CFS have not been identified and no specific diagnostic tests are available.”
He's talking about CFS not M.E. In contrast, Myalgic Encephalomyelitis is not a disorder. It's an acute onset, infectious, chronic disabling, neurological disease. Unlike CFS, Myalgic Encephalomyelitis is not characterised by profound fatigue. It is characterised by acquired diffuse brain injury, specific paralytic muscle impairment, reduced circulating blood volume and a worsening of symptoms when the person is active beyond their physical, cognitive, sensory and/or orthostatic limits. Whilst the causes of CFS may not have been identified, the cause of Myalgic Encephalomyelitis has been known for over 50 years. It is known that M.E. is a biphasic epidemic and endemic disease with an incubation period of 4 – 7 days caused by an enterovirus. Lastly, although there is no single specific test to diagnose M.E., there are several tests which give an accurate diagnosis (especially a SPECT brain scan). M.E. is scientifically measurable due to the CNS injury and physiological changes that are evident. Myalgic Encephalomyelitis is not an invisible illness. The evidence is abundantly present within the patient
Continued >
Dr Enlander's website also states, “CFS is a disorder that causes extreme fatigue.” This 'fatigue' label is a red herring. It may well be a main concern in CFS but fatigue carries no importance in Myalgic Encephalomyelitis. In fact, it is often not a presenting factor in many M.E cases. Fatigue in M.E. is a myth.
Nancy Klimas (who advocates exercise treatment programs) is also featured in Canary in a Coal Mine. Again, Nancy Klimas is not an M.E. expert. Her immunological background covers AIDS and CFS. If you want to make a film about Myalgic Encephalomyelitis, make sure you're not actually highlighting CFS. And make sure that the people featured in the film are a true representation of Myalgic Encephalomyelitis.
This film sends out a confusing message because it states it's about Myalgic Encephalomyelitis but all it does is emphasise chronic fatigue and the CFS misdiagnosis which is an insult to the people who are extremely ill with Myalgic Encephalomyelitis. People are dying because of misinformation like this and, quite frankly, enough is enough.
CFS is neither a disease nor a specific illness. It's an umbrella term which has become 'en vogue' by lazy doctors when their patients present with chronic fatigue. People with all manner of illnesses are incorrectly diagnosed with CFS. There are over 30 illness that have been, and could be, misdiagnosed as CFS including cancer, thyroid problems, leukaemia, heart disease, lyme disease, APS, renal problems, CJD, brain functioning problems, MS, Chiari malformation, and psychiatric illness. CFS is always a misdiagnosis.
The film makers say, “We want to become the most popularly supported documentary film in the history of Kickstarter.” Well this could possibly happen. Not because this is a good film but because people who have been diagnosed with CFS, ME/CFS, CFIDS, and M.E. are desperate. They are absolutely desperate for effective treatment and a cure.
Continued >
As long as Myalgic Encephalomyelitis keeps getting put in the universal melting pot with CFS/ME, CF, CFS, FM, and CFIDS, confusion and ignorance will remain. There are countless patients who have been given a CFS/ME (mis)diagnosis whose illness onset and symptoms are far removed from Myalgic Encephalomyelitis criteria, yet these people and their physicians refer to their illness as M.E. This pushes the children and adults with Myalgic Encephalomyelitis even further into the danger zone. M.E. is not the cloak of many colours. It has a clear definition.
This film doesn't even come close to pinning the tail on the correct anatomy of the donkey. Do you want to know what's holding up research and a cure for M.E.? Large egos. Myalgic Encephalomyelitis has become a pawn in a game of politics, power and greed.
The truth is that the cause of M.E. (an enterovirus) is known. This fact is documented on many research papers. Today, most researchers support this fact. However, some do not and it is those people who are holding up research, treatment and a possible cure. Unless researchers agree on paper (at least), we cannot move forward. Once they agree on the cause (or are seen to be agreeing), doctors will learn about M.E. in medical schools, the media will begin reporting the truth, patients will cease to be at risk from psychiatry, and governments will release funds for correct research, leading to appropriate treatment and possibility a cure.
Unfortunately, while films like this keep muddying the truth, real progress cannot be made. There are already many videos, books, research papers, etc in existence that educate the public about the truth of M.E. Why not promote those? We are each responsible for what is happening to children and adults with Myalgic Encephalomyelitis. Can we allow our own desperation to put the lives of others at risk? I sincerely recommend getting empowered by the truth and getting educated about Myalgic Encephalomyelitis. The first stop to visit is www.hfme.org
As to the disastrous film footage and images... Within a few seconds of watching the film, I knew this was about CFS. When you have true M.E. or are a carer of a loved one with Myalgic Encephalomyelitis, you'll understand my previous sentence completely. Personally, I had a difficult time viewing this film – I had to keep stopping because it infuriated me. Especially the repeated, “Tired all the time,” “Chronic Fatigue Syndrome,” “Tired all the time”...
Like a stuck gramophone needle, this really did 'needle' me and was proof that Canary in a Coal Mine is focussed on fatigue. Mention 'fatigue' to someone with Myalgic Encephalomyelitis and they'd probably punch your lights out (if they could). It's the worst insult you could give.
Using old film clips that had absolutely nothing to do with Myalgic Encephalomyelitis was distracting and confusing. What a tacky and unnecessary bit of filming! It portrayed the film as being insincere and false. It conveyed a strong message that their storyline was weak and needed to be spiced up. There really is no need to add drama to true M.E. Myalgic Encephalomyelitis is already fraught with its own dangers.
Hopes of moving forward have been dashed by this film. It has put children and profoundly severe M.E. adults further in harm's way. By promoting CFS, its message is one of abandonment, misunderstanding and ignorance. No matter how well meaning its intentions, it is doing more harm than good.
Today, with tremendous struggle and pain, my daughter whispered, “Tell them mum. Speak up for all the people like me who can't speak for themselves. Tell them how things like this [film] put us in danger.”
The truth about Myalgic Encephalomyelitis is already out there. But so are the many signposts which point the way to misinformation and ignorance. Which path are you going to follow?
Diane
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