Make up tutorials aren't so useful for the scared
Great post Gracenote.
The fact you have to feel caution of running and hiding by backing the broken and vulnerable is testimony to the huge mess of what CFS is Gracenote. It's sad we have people defending a 'scientist' who blames others for their emotional reaction to a potentialy fatal disease. It's sad they tell us not to defend someone who's just stabbed us in the back by citing we are 'attacking' the attacker. As you know this is common place amongst people involved with ME, CFS especially in those who do not have either condition, and who pose as CFS patients both online and in person. (Internet is anonymous and no diagnostic test needed for CFS diagnosis). Have faith many people are not who you think they are.
My personal issue is not so much with patient's views but those of the professional. Patient's are just patients, and have no direct influence whatsoever. CFS funding is steered by politics. Advocacy groups (unless involved in ground breaking scientific research) are powerless with regards to a politicised disease (CFS), that is controlled by men in suits, rather than men and women in lab coats. It's controlled for a reason that XMRV has taught us.
One way to cope with apparent betrayal is to consider if these people even have your illness, most probably not. Thus there is no betrayal.
That way, folk who are deaf to your advice are less of a heretic and more of someone from another team. This changes a lot in terms of long term bad feelings. Feelings can then pass, and concentration on the uneducated scientist maintaining unhelpful discussion can be focussed on, instead of their fanboys.
To Alan Dove's supporters credit, they never signed up to the ME label or were ever given it. Neuro immune disease and the horric consequences of it, are not part of the diagnostic criteria for CFS or indeed the psychiatric professions 'CFS/ME' umbrella term. There is an obvious division on this forum, which to be fair is called ME/CFS so it supports two different conditions with bias to one due to the world health organisation neuro disease 'ME' not being diagnosed in America. Of note, I'm yet to see one post in support of Alan Dove from an ME patient which is understandable as many are in sunglasses indoors and can't bare the glare of the PC monitor and are unable to sit upright or out stretch their arms to a keyboard. Naturally these people have a right to protest and critique someone who infuritates them the same as someone of an ethnic minority would protest and critique an obvious racist who claims only people from certain backgrounds get upset over injustice they help maintain.
At the end of the day, unless people are annihilated by neuro immune disease, no one cares about you or I or anyone else because people assign to what they understand or desire not what they are not aware of. People confused about supporting a view, often lean towards the person with power and influence. Influential people appear to be the authority on a subject, rather than the student who has been given a free pass to speak whilst others mouths are duct taped.
In most cases. People with influence and priviledge will win the day. This is how power structures are maintained in most circumstances. Note there is a real 'fight' now in the CFS community to keep CFS as a hodge potch of anything and everything that causes chronic fatigue, and not a pro oxidative incurable brain disease caused by XMRV. Sides will have to be taken and taken they will until politicians decided who is going where.
The real sticking point is, people with XMRV don't have CFS and have been misdiagnosed. Until the CDC accept this and announce it, then XMRV and other neuro immune illnesses will be allinged to CFS and thus support the name and label CFS, ironically fighting for a totall different cause to others with CFS.
Hence the Alan Dove comments mixed reaction.......
This is common in human nature and not really anything to do with disease, more psychology. When one is serially utterly broken, then one understands more about the losing team. However, only a few will come to the aid of the person with the bloodied nose, whilst others will run to the celebrating team. It's easier, less hassle and takes less thought. If 'team' CFS were a football team, the 100% neuro belief of CFS players would currently be on the bench excluded from the match. Those playing the game? One side would be psychological and the other half being a bit of immunology.
When I first became ill, I knew of no one with ME, and didn't care about them either. Why would I? I was still 'team used to be healthy' and employed. Decades later and the reality of this illness and the reality that people die from it meant regardless of how ill I was myself, I would defend others (who like myself) now watched 'Team CFS' play from the sidelines. In a way, I developed a latent loyalty to people in my situation but it took a long time to develop and many ghastly situations both personal and foreign; reading about others in newspapers and the Internet etc.
Not everyone's life with CFS consists of waking up, eating, toileting and bed with occasional Internet or if lucky, a visitor once a few months. This is evidenced by the fact someone with prejudiced bigoted views about people with CFS, is still supported by other people who meet the diagnostic critera CFS. When people suffer more, they will understand. Thing is, they won't suffer more so the situation is static not fluid.
What is a right though, (a human right) is to defend one's own self and others. No 'personal attack' rule on a forum can prevent someone from coming to the rescue of people who have no voice and have just been 'personally attacked' themselves, which is what Alan Dove has just done to at least 250,000 severely affected Americans never mind others around the world. These comments about not replying to disablity mocking is convenient to people who want to stifle debate and criticism of one particular side, obviously! People with severe ME and CFS have no voice, no funding, no media exposure and no hope. All Alan Dove does for these people is dash more hope and increase more feelings of self hatred, shame and hopelessness. He doesn't get 3 hrs sleep a night (or less) due to being short of breath due to heart failure or tire of balancing himself over a female toileting container in bed. Many with CFS do though, hence Alan Dove should correct what he said about CFS patients and show leadership for what was previously a sensible interesting public information show. Ironically, many CFS and ME patients he has just deeply offended regularly listened to - despite his belief science is for scientists.
As ME and CFS patients, we unite through misery and through a bond of realising and speaking out over injustice. We also become fractal through my previous observation of disagreement of the levels of feeling and emotion 'anti ME' and 'anti CFS' comments cause in people affected with these horrible conditions. Some blow up, some are indiferent and shrug their shoulders, some don't care, and some defend the attacker.
In a disease with a diagnostic test, this doesn't and cannot happen. In that situation people share the same common unique disease causing factor. With the label ME or CFS, this isn't possible and so there are lots of issues with communicating on a spiritual level with others who share the illness label given to us. Agenda's are the catalyst at the end of the day, and these don't have to be evil or nasty and can be innocent or simply ill advised. We all have personal agenda's. Alan Dove's is that he feels he can talk about CFS with gay abandon, an illness he is not educated in. That is his perogative and it's mine and others to correct him in factual errors and the consequences of loose talk.
Someone who is house bound for decades will be far more upset of the likes of Alan Dove than someone who can socialise and not suffer every day in unbearable pain (at rest) and maybe wash their body once a week whilst seeing their front teeth are eroding in the mirror yet they can do nothing about it as they cannot get to dentist for physical and financial reasons. Alternatively it may be a life of burning chest pain and vertigo causing permanent disablement leading to opportunities of a love life being executed and physical intimacy amounting to stroking the dog's floppy ears, that happens to be stuffed.
Either way, tell someone with CFS, ME like this they are mentally unstable compared to those with Prostate Cancer and the comparison is laughably innacurate, but no less hurtful. When one's body is stinking, and decaying due to utter medical exclusion helped by uninformed people like Alan Dove, then they process his comments on an entirely different level and place different meaning on every single word. Guess what, that happened.
The majority of people with 'CFS' diagnosed in the last 10 years have no idea what neuro immune disease ME does to people as they don't have ME or even heard of it. The same way someone who isn't pregnant has no idea of the pain and psychological trauma (to some) of child birth. What is different though, is men don't speak on behalf of women regarding scientists who mock women who suffer mentally from the act of childbirth. Women speak for women regarding complex maternity experiences and defend other women being verbally tormented. These women would never be accused by others for 'personal attacks'. They would be clapped and congratulated.
To our cost, CFS patients speak for ME patients, and scientists who know nothing about CFS or ME speak for CFS and ME patients. This is what Alan Dove has done. He makes public statements, and therefore by nature will be criticised robustly for the hurt he causes. He should apologise, but won't. He has no idea people die of ME and CFS, and the vast majority who do die, commit suicide. Talking about ME and CFS in public as a scientist is therefore a procarious matter that should be thoroughly thought out. Alan Dove did not do this, and has been caught out by the furore he has caused in many. NB: The vast majority of people feeling put out are silent due to severe disabilty and by default are unable to protest......unseen, unconsidered.
Instead of realising the error of his ways, Alan Dove becomes defensive in a blog/post and says people with CFS who criticise see him as an 'idiot'. Strange but very easy to not reply in depth by saying this, and just use a few lines. Unlike people with ME and CFS he earns money, can go on vacation and prepare his own meals, wash, and breathe without difficulty. If we could too, then probably we also would return to upset patients with an Internet soundbite and turn on the ice hockey on the plasma and say 'whatever'...Which is what Alan has done. His choice. People are how they are and we can change no one.
In his shoes and anorexic knowlede on bulky CFS biomedical research I'd do the same to be honest. Nothing like a negative experience and moment of hindsight to alter an engraved view though. On a ME/CFS forum, ME patients will be the minority and so sadly we get excluded from the majority. That's part of the deal with this condition no one can change it and will only be able to rectify with bombshell moments like XMRV coming along and changing the entire state of play.
If and when XMRV is accepted in the medical community the severely ill with ME and CFS can go on a illness label vacation (no other is possible) and return with a new label that fits their procarious predicament more suitably that a Chronic Fatigue Syndrome. NB: For some, CFS is an approrpriate term and probably quite useful to explain what is wrong. We are all aware of this, but others are included too. 1 in 4 people are bed ridden and housebound with CFS and ME, that's 25%.
It's best to let the CFS people without severe neuro immune disablity have their say and us with have ours. That is equality and that is fair. In people not as far down the slippery biological branch that dips into the volcano of acid, Alan Dove would be seen as simply someone with a differing view, rather than someone who's just single handedly ripped neuro immune disease ME (CFS) to shreds by baiting patients with biased preset views that are outdated and unwelcomed.
Keep the flag waving Gracenote, the flag of hope for change and never surrender. Things will change.
The WPI are the armada for this change.
So, after all these years, why do the Alan Dove's of the world still think they can get away with such condescending, belittling comments? Where IS the strategic, organized, tactical and persuasive responses to blogs like his? Why is it that we patients still feel we have to defend ourselves against these types of attacks? Might it be because there is no "official" organization taking them to task?
I don't really get the point of trying to adjust the communication from the patients when these kinds of blogs are going unchallenged. I would love to hear the CFIDS Association respond quickly and decisively each time such misinformation and yes, abuse, is being perpetuated. Where is the outrage from our patient organization? I realize that these things take time but, jspotila, you've posted several times speaking to patients and suggesting that we tone it down. I suggest that we would be better served if you direct your comments to Mr. Dove and others who think that it's okay to be so cavalier about a group of patients who have suffered far too long.
There, I said it.
Do I need to run and hide?
Great post Gracenote.
The fact you have to feel caution of running and hiding by backing the broken and vulnerable is testimony to the huge mess of what CFS is Gracenote. It's sad we have people defending a 'scientist' who blames others for their emotional reaction to a potentialy fatal disease. It's sad they tell us not to defend someone who's just stabbed us in the back by citing we are 'attacking' the attacker. As you know this is common place amongst people involved with ME, CFS especially in those who do not have either condition, and who pose as CFS patients both online and in person. (Internet is anonymous and no diagnostic test needed for CFS diagnosis). Have faith many people are not who you think they are.
My personal issue is not so much with patient's views but those of the professional. Patient's are just patients, and have no direct influence whatsoever. CFS funding is steered by politics. Advocacy groups (unless involved in ground breaking scientific research) are powerless with regards to a politicised disease (CFS), that is controlled by men in suits, rather than men and women in lab coats. It's controlled for a reason that XMRV has taught us.
One way to cope with apparent betrayal is to consider if these people even have your illness, most probably not. Thus there is no betrayal.
That way, folk who are deaf to your advice are less of a heretic and more of someone from another team. This changes a lot in terms of long term bad feelings. Feelings can then pass, and concentration on the uneducated scientist maintaining unhelpful discussion can be focussed on, instead of their fanboys.
To Alan Dove's supporters credit, they never signed up to the ME label or were ever given it. Neuro immune disease and the horric consequences of it, are not part of the diagnostic criteria for CFS or indeed the psychiatric professions 'CFS/ME' umbrella term. There is an obvious division on this forum, which to be fair is called ME/CFS so it supports two different conditions with bias to one due to the world health organisation neuro disease 'ME' not being diagnosed in America. Of note, I'm yet to see one post in support of Alan Dove from an ME patient which is understandable as many are in sunglasses indoors and can't bare the glare of the PC monitor and are unable to sit upright or out stretch their arms to a keyboard. Naturally these people have a right to protest and critique someone who infuritates them the same as someone of an ethnic minority would protest and critique an obvious racist who claims only people from certain backgrounds get upset over injustice they help maintain.
At the end of the day, unless people are annihilated by neuro immune disease, no one cares about you or I or anyone else because people assign to what they understand or desire not what they are not aware of. People confused about supporting a view, often lean towards the person with power and influence. Influential people appear to be the authority on a subject, rather than the student who has been given a free pass to speak whilst others mouths are duct taped.
In most cases. People with influence and priviledge will win the day. This is how power structures are maintained in most circumstances. Note there is a real 'fight' now in the CFS community to keep CFS as a hodge potch of anything and everything that causes chronic fatigue, and not a pro oxidative incurable brain disease caused by XMRV. Sides will have to be taken and taken they will until politicians decided who is going where.
The real sticking point is, people with XMRV don't have CFS and have been misdiagnosed. Until the CDC accept this and announce it, then XMRV and other neuro immune illnesses will be allinged to CFS and thus support the name and label CFS, ironically fighting for a totall different cause to others with CFS.
Hence the Alan Dove comments mixed reaction.......
This is common in human nature and not really anything to do with disease, more psychology. When one is serially utterly broken, then one understands more about the losing team. However, only a few will come to the aid of the person with the bloodied nose, whilst others will run to the celebrating team. It's easier, less hassle and takes less thought. If 'team' CFS were a football team, the 100% neuro belief of CFS players would currently be on the bench excluded from the match. Those playing the game? One side would be psychological and the other half being a bit of immunology.
When I first became ill, I knew of no one with ME, and didn't care about them either. Why would I? I was still 'team used to be healthy' and employed. Decades later and the reality of this illness and the reality that people die from it meant regardless of how ill I was myself, I would defend others (who like myself) now watched 'Team CFS' play from the sidelines. In a way, I developed a latent loyalty to people in my situation but it took a long time to develop and many ghastly situations both personal and foreign; reading about others in newspapers and the Internet etc.
Not everyone's life with CFS consists of waking up, eating, toileting and bed with occasional Internet or if lucky, a visitor once a few months. This is evidenced by the fact someone with prejudiced bigoted views about people with CFS, is still supported by other people who meet the diagnostic critera CFS. When people suffer more, they will understand. Thing is, they won't suffer more so the situation is static not fluid.
What is a right though, (a human right) is to defend one's own self and others. No 'personal attack' rule on a forum can prevent someone from coming to the rescue of people who have no voice and have just been 'personally attacked' themselves, which is what Alan Dove has just done to at least 250,000 severely affected Americans never mind others around the world. These comments about not replying to disablity mocking is convenient to people who want to stifle debate and criticism of one particular side, obviously! People with severe ME and CFS have no voice, no funding, no media exposure and no hope. All Alan Dove does for these people is dash more hope and increase more feelings of self hatred, shame and hopelessness. He doesn't get 3 hrs sleep a night (or less) due to being short of breath due to heart failure or tire of balancing himself over a female toileting container in bed. Many with CFS do though, hence Alan Dove should correct what he said about CFS patients and show leadership for what was previously a sensible interesting public information show. Ironically, many CFS and ME patients he has just deeply offended regularly listened to - despite his belief science is for scientists.
As ME and CFS patients, we unite through misery and through a bond of realising and speaking out over injustice. We also become fractal through my previous observation of disagreement of the levels of feeling and emotion 'anti ME' and 'anti CFS' comments cause in people affected with these horrible conditions. Some blow up, some are indiferent and shrug their shoulders, some don't care, and some defend the attacker.
In a disease with a diagnostic test, this doesn't and cannot happen. In that situation people share the same common unique disease causing factor. With the label ME or CFS, this isn't possible and so there are lots of issues with communicating on a spiritual level with others who share the illness label given to us. Agenda's are the catalyst at the end of the day, and these don't have to be evil or nasty and can be innocent or simply ill advised. We all have personal agenda's. Alan Dove's is that he feels he can talk about CFS with gay abandon, an illness he is not educated in. That is his perogative and it's mine and others to correct him in factual errors and the consequences of loose talk.
Someone who is house bound for decades will be far more upset of the likes of Alan Dove than someone who can socialise and not suffer every day in unbearable pain (at rest) and maybe wash their body once a week whilst seeing their front teeth are eroding in the mirror yet they can do nothing about it as they cannot get to dentist for physical and financial reasons. Alternatively it may be a life of burning chest pain and vertigo causing permanent disablement leading to opportunities of a love life being executed and physical intimacy amounting to stroking the dog's floppy ears, that happens to be stuffed.
Either way, tell someone with CFS, ME like this they are mentally unstable compared to those with Prostate Cancer and the comparison is laughably innacurate, but no less hurtful. When one's body is stinking, and decaying due to utter medical exclusion helped by uninformed people like Alan Dove, then they process his comments on an entirely different level and place different meaning on every single word. Guess what, that happened.
The majority of people with 'CFS' diagnosed in the last 10 years have no idea what neuro immune disease ME does to people as they don't have ME or even heard of it. The same way someone who isn't pregnant has no idea of the pain and psychological trauma (to some) of child birth. What is different though, is men don't speak on behalf of women regarding scientists who mock women who suffer mentally from the act of childbirth. Women speak for women regarding complex maternity experiences and defend other women being verbally tormented. These women would never be accused by others for 'personal attacks'. They would be clapped and congratulated.
To our cost, CFS patients speak for ME patients, and scientists who know nothing about CFS or ME speak for CFS and ME patients. This is what Alan Dove has done. He makes public statements, and therefore by nature will be criticised robustly for the hurt he causes. He should apologise, but won't. He has no idea people die of ME and CFS, and the vast majority who do die, commit suicide. Talking about ME and CFS in public as a scientist is therefore a procarious matter that should be thoroughly thought out. Alan Dove did not do this, and has been caught out by the furore he has caused in many. NB: The vast majority of people feeling put out are silent due to severe disabilty and by default are unable to protest......unseen, unconsidered.
Instead of realising the error of his ways, Alan Dove becomes defensive in a blog/post and says people with CFS who criticise see him as an 'idiot'. Strange but very easy to not reply in depth by saying this, and just use a few lines. Unlike people with ME and CFS he earns money, can go on vacation and prepare his own meals, wash, and breathe without difficulty. If we could too, then probably we also would return to upset patients with an Internet soundbite and turn on the ice hockey on the plasma and say 'whatever'...Which is what Alan has done. His choice. People are how they are and we can change no one.
In his shoes and anorexic knowlede on bulky CFS biomedical research I'd do the same to be honest. Nothing like a negative experience and moment of hindsight to alter an engraved view though. On a ME/CFS forum, ME patients will be the minority and so sadly we get excluded from the majority. That's part of the deal with this condition no one can change it and will only be able to rectify with bombshell moments like XMRV coming along and changing the entire state of play.
If and when XMRV is accepted in the medical community the severely ill with ME and CFS can go on a illness label vacation (no other is possible) and return with a new label that fits their procarious predicament more suitably that a Chronic Fatigue Syndrome. NB: For some, CFS is an approrpriate term and probably quite useful to explain what is wrong. We are all aware of this, but others are included too. 1 in 4 people are bed ridden and housebound with CFS and ME, that's 25%.
It's best to let the CFS people without severe neuro immune disablity have their say and us with have ours. That is equality and that is fair. In people not as far down the slippery biological branch that dips into the volcano of acid, Alan Dove would be seen as simply someone with a differing view, rather than someone who's just single handedly ripped neuro immune disease ME (CFS) to shreds by baiting patients with biased preset views that are outdated and unwelcomed.
Keep the flag waving Gracenote, the flag of hope for change and never surrender. Things will change.
The WPI are the armada for this change.