I'd Like to Learn About the Stigmas You Guys Face

John Kim

Member
Hi Everyone,[fright]
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I'm new to this forum. To give some backstory, my childhood friend has a severe case of ME/CFS and his father is leading an effort at Stanford to research the disease and I really want to do what I can to help ME/CFS as a whole. I'm personally not a scientist so I cannot help in that way, but I do work in advertising and I have a deep understanding on how marketing works as a whole, so I'd like to offer myself to the cause in that way: to help fundraising and raise awareness. I'd like to ask you, the community, a number of questions to help my efforts to raise awareness:

• What stigmas do you deal with on a daily basis from either friends/family/colleagues or doctors/physicians?
• What did you have to go through to get diagnosed?
• Have the stigmas gotten better throughout the years or has it stayed about the same?

Any insights that you guys can give me will be of great help, thank you!
 
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JennyJenny

Well-Known Member
CF is Chronic Fatigue, a symptom of many diseases, illnesses and treatments. MS and Lupus can have CF. When MS and Lupus symptoms are under control or even in remission, the CF goes away. Depression can have CF. With medications and counseling depression can be lifted and CF goes away. Chemotherapy can cause CF. Once the treatments are over the CF goes away.

CFS is Chronic Fatigue Syndrome, a grossly misnamed disease. CFS is lifelong and never goes away. A serious symptom of CFS is Chronic Fatigue which never goes away because it is not just a symptom, it is a huge part of the disease and yet in no way is it the only symptom. PEM is Post Exhertion Malaise. No other disease or illness has such a symptom. If you grocery shop the rebound effect of fatigue can put you into bed for days. If you go for a walk you will fatigue yourself to the extent you will not be able to get out of your home for days and maybe not even to your mailbox for a week.

"The threshold for eliciting PEM and the frequency and severity of PEM vary with activity, but also illness severity. Learning how to "pace" limits the frequency and severity of PEM. Perfect "pacing" can eliminate PEM---but that doesn't mean the tendency to develop it is gone, or that the patient isn't severely limited. The illness is characterized and defined by activity (all types of activity) intolerance, and the tendency to develop PEM, not the amount that is currently present or its current severity. Illness severity is definitely related to frequency and severity of PEM. I've seen people who feel they are mostly recovered relapse severely by trying to do too much, especially by trying to exercise without respecting the potential for developing PEM and relapse. Severely ill can barely think without triggering PEM." Dr. Lucinda Bateman

Every Action has an Equal and Opposite Reaction? Nope.
Every Action has a completely Adverse and Overreaction by 100x. ~ S.R.

I initially became ill with Fibro in 1974 and 1979 with ME/CFS with the worst case of mono the doctor ever saw. But it took until 1998 to get diagnosed with Fibro and about 2003 for ME/CFS. I fainted during a table tilt test around age 32 and was told to eat salt. At 51 my BP went to 80/50 and stayed there and had to be put on Fludrocortisone. My Thyroid numbers blew 2014 (although now I realize I had symptoms for about 5 years) and I am Hypothyroid and on Levothyroxine.

Depression medications were a nightmare and I failed on all of them. I failed on 2 Fibro drugs and I am on the off label Gabapentin as in my "sleep" I go through seizure like activity. I also use LDN, Tizanadine and Zolpidem just for sleep. Buspirone for anxiety. It took 13 years and maybe 8 doctors to get that combo right. I have 3 pages of medications I have failed on for those 13 years.

You are taken advantage of by charlatans who sell books and make commercials and alternative doctors and therapists who can make you well if you just follow their protocol for up to 3 years and if you fail on it then you didn't do it right.

Family and friends hear Chronic Fatigue Syndrome and don't understand you have a disease that was misnamed. It comes with a slew of other symptoms and comorbids. Here is a link to an article by Adrienne Dellwo spelling out the symptoms you can get with Fibro and ME/CFS. (Click the subject link in the forum) Symptoms of Fibro and ME/CFS - Click the Subject Link in the Forum

There are ME patients that are angry that CFS is being studied and don't believe it is related. Most US Researchers know CFS is ME they just are not all so obviously stricken with ME and so are given the diagnosis CFS. So there can be infighting within the community which is of no concern to me really. Here in the US the Researchers know they are the same and most likely differing severity due to perhaps causation (virus, mono, bacterial infections, toxic mold exposure, toxic chemical exposure) and in the end may be a genetic fault in us and we were bound to get "something" that sent us reeling. A very small set of patients have active HPV or EBV. Few like myself had theirs come on with mono.

It may turn out like MS, 4 different types with differing severity and outcomes. There is a dry eye and wet eye degenterative disease, both the same disease but the dry is the more common and less severe. With the wet you go blind within a matter of years. So I believe there will be subsets of ME/CFS and get ready because if you think the name SEID is crazy, just wait till they figure out what is going on and change even the ME name.

Here are a few quick videos. This is Dr. Nancy Klimas speaking about ME/CFS Diagnosis. (Click the subject link in the forum) Also, in the comment section when the link below first gets you there you can click the blue link for a short youtube video by Dr. Klimas but to see the longer video by her you have to click the subject line in the forum: ME/CFS Diagnosis and Name with Dr. Nancy Klimas.
ME/CFS Diagnosis - Subject Link In Forum

Two Videos on Howard Bloom Explaining ME/CFS - Click on the blue links in the forum.
The Truth At Any Price and On What Happens When We Extend Ourselves

I could go through more but I will let others chime in. If you have questions for me just type @JennyJenny to let me know you have a question for me.

Thanks for your interest. (I know I did not answer your questions exactly and will try to come back to do that but sometimes it is very emotional and difficult to dredge up 40 years of what I have been through.)
 
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JennyJenny

Well-Known Member
• What stigmas do you deal with on a daily basis from either friends/family/colleagues or doctors/physicians?
I don't look sick when I am out grocery shopping. I just rested for 2 weeks not leaving my apartment, being able to shower almost every day and keeping things somewhat clean and neat. But they didn't see me sitting in a lump and disheveled, not able to do the dishes and able to wash and dry a load but can't fold the clothes for days. Pain throughout my entire body, sunken eyes, searing migraines. And one day I feel well and have to run and get groceries and I look just fine.

Since doctors did not diagnose us correctly for years everyone thought I was depressed more than anything and I got all the wrong medications from doctors (and even when diagnosed correctly they were still treating Fibro and ME/CFS from a psychiatric viewpoint) and people didn't understand why I couldn't do the things people with depression could do in order to help themselves like exercise and go for walks and such.

They don't understand you are not the person you used to be and cannot do things with them or for them. Your priorities have changed, you are trying to hang onto functionality and independence, not look for a boyfriend, go out to lunch with them, or help them with their problems. So you are no use to them anymore and they move on calling you depressed and someone who doesn't want to get better.

• What did you have to go through to get diagnosed?
It took 25 years, from age 13 to 38, to get diagnosed with Fibromyalgia. Physichal Therapy of sonor waves, massage, exercise. Never really well but by 17 I was hit with a horrific case of mono and my doctor knew I would never have the energy I once had. Since it was 1979 he wasn't really able to tell me why but being an Army doctor he had seen and heard things like this. Fainting during a table tilt test, having TMJ were pretty much the only tests I ever had a "positive" on but blood test and blood analysis and on and on, nothing came up for decades. At 38 due to Fibro (and ME/CFS but not diagnosed yet) I had to leave my corporate job. I became a dog walker because a doctor told me "What ever you do, walk" which isn't great advice for a Fibro patient but is disastrous for an ME/CFS patient. Working as a dog walker and pet sitter my body and mind imploded, I had a nervous breakdown. Finally, I was told at around 42 I had CFS. I was now disabled thanks to doctors not diagnosing me and telling me that I would need to do 1/4 of what I was trying to do. Over the years I had an MRI on my neck (the tech wrote it was grossly normal) but I was in horrific pain. MRI on leg showed nothing. X-rays of my back showed nothing. No blood test and I had a LOT of them. Periods were horrific all my life. Severe pain and really heavy bleeding. Finally at 49 I was told I could have an ablation. Yes, thank you please. Nutritionists and Homeopaths did not help. No doctor or Specialist. 2 Sleep studies, the first after trying the date rape drug on me and it only severely drugged me during the day and my mind raced at night that there was nothing she could do for me. The second they only said I had RLS and with a blood test Low Ferritin iron but my overall iron is high (unusual) and nothing could be done. Not till I was finally diagnosed, had to still go through years of depression medications, and this last 5 years did I have doctors finally prescribing me the right meds, off the wrong but if it had not been for decades of doctors not knowing what to do and then giving me everything wrong and wrong advice I may not be disabled today.

• Have the stigmas gotten better throughout the years or has it stayed about the same?
For me the stigmas have gotten better. But I send everyone I know the breakthrough research, (Dr. Montoya's brain scans from the New York Times) the videos like the "Invisible Illness" in the Palo Alto Online at youtube and have been getting them ready for the Forgotten Plague documentary and I sent them the Cytokine research. I e-mail them information or print it out and give it to them. And if there are people that are not going to treat me properly, they are removed from my life. We have more ammunition than ever. And I want MORE!
 

Snookum96

Active Member
The worst stigma for me is from the medical profession. Most of the doctors I have met think CFS is not a real illness. They tell me it's depression, anxiety or just plain made up. Of the 30 or so doctors I've seen in the last two years, only 1 has been helpful and that's the one I found myself and have to pay for even though I like in Canada where we have Universal healthcare.

The closest I've come to a diagnosis is "I'm 95% sure you have CFS but fatigue is no mystery, if you slept well you wouldn't be sick" he then prescribed CBT.

I can't work so have no comment on work colleagues but because of the name most people just think I'm tired all the time and tell me they understand because they work long hours.

My family has been awesome but a lot of people get completely abandoned.

My symptoms are variable and unpredictable, but I am progressively getting worse and just bought a wheelchair. I couldn't get funding help from the government because apparently I'm not disabled enough.

I'm fairly new in terms of length of illness, 2 yrs + since onset and 1.5 years since I've been mostly housebound. People with CFS are the strongest people I have ever come across. Many have been sick for decades and continue to be mistreated, mislabelled and discriminated against.

Thank you for your question, it's nice to see someone trying to learn the true effects of this disease.

I would be happy to answer more questions and give you more details if you would like. You can send me a private message or check out my blog in my signature and contact me from there.

Good for you for trying to help a friend and using your skills to do it! We need more people like you to help advocate for us, many of us are bed or housebound so some assistance is much appreciated!

Jodie
 

John Kim

Member
This is great, please keep these insights coming. JennyJenny and Snookum96, it seems like you guys are describing similar problems that my friend went through regarding people have a hard time believing, especially doctors. Does this happen to a lot of people who have are getting diagnosed now (like within the last year)? Also, how did you feel?

My goal is to communicate the problems with the disease on an emotional level to reach a broader audience.
 

JennyJenny

Well-Known Member
This is great, please keep these insights coming. JennyJenny and Snookum96, it seems like you guys are describing similar problems that my friend went through regarding people have a hard time believing, especially doctors. Does this happen to a lot of people who have are getting diagnosed now (like within the last year)? Also, how did you feel?

My goal is to communicate the problems with the disease on an emotional level to reach a broader audience.
I was pretty easy going and submissive and pretty much took the abuse of drugs they through at me. I actually don't blame my doctors as much as the entire health system, CDC, NIH and generally bad research (XMRV) was tossing them around and doing their best to navigate my symptoms.

I am angrier now and disgusted that funds for research is not coming through.

If I am correct it can still take 3-5 years to get a diagnosis even if you become very ill from the get go. I am hopeful that the SEID criteria will get more patients diagnosed and fast. And the PEM is recognized and GET is THROWN OUT and CBT is pushed to the side. (Research is showing it is not working for Depression patients anyway.)

I am angry more than anything. Angry for the entire healthcare system not listening to patients and needing research to believe us. Because millions worldwide make this stuff up. The UK and Australia research is bent towards psychiatric issues and I don't trust much coming out of those countries.

Yes, doctors, the CDC and NIH, having to fight for our research, infighting with definitions and names, are taking a toll on us emotionally. The illness is not an emotional one but the process of getting care causes us emotional issues.
 

Snookum96

Active Member
Yes John, this continues to happen.

I went to an internal medicine clinic 6 months ago at a respected teaching hospital in Toronto and I asked them about CFS and specifically the IOM report.

Their response was "oh that's controversial". I read the report later and they thought it was depression or somatoform disorder.

I agree with @JennyJenny I am also very angry. I feel less than human when I visit doctors. They don't take me seriously and make me feel horrible. I'm not at all surprised there are suicides with this.
Canada spends 0.52$ per patient with CFS on research. MS gets 66$. nobody cares about the illness.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi Everyone,

I'm new to this forum. To give some backstory, my childhood friend has a severe case of ME/CFS and his father is leading an effort at Stanford to research the disease and I really want to do what I can to help ME/CFS as a whole. I'm personally not a scientist so I cannot help in that way, but I do work in advertising and I have a deep understanding on how marketing works as a whole, so I'd like to offer myself to the cause in that way: to help fundraising and raise awareness. I'd like to ask you, the community, a number of questions to help my efforts to raise awareness:

• What stigmas do you deal with on a daily basis from either friends/family/colleagues or doctors/physicians?
• What did you have to go through to get diagnosed?
• Have the stigmas gotten better throughout the years or has it stayed about the same?

Any insights that you guys can give me will be of great help, thank you!
Thanks John and thanks for your support for Whitney :). If you're the one that set up a Facebook page for him - please post the URL.

Here are a couple of ways the stigma of ME/CFS impacts me

  • I feel uncomfortable telling anyone - from doctors to friends - that I have it. I will not tell a doctor who it not knowledgeable about it that I have ME/CFS. I don't see doctors who are not experienced with ME/CFS for ME/CFS. (Given the few doctors there are that means I really don't see MD's for ME/CFS. I simply tell doctors that I'm healthy and that I have 'x' problem.
  • How to explain to a date that you can't do many of the things they want to do - because you can't tolerate exercise. Try putting chronic fdatigue syndrome into a dating profile (lol)
I'm lucky that my family is always been on board - for more than 30 years - no problem there. I'm sure the general attitude has gotten better in the medical profession but it's touchy. Many rheumatologists don't want to treat fibro patients and almost no one wants an ME/CFS patient. My friend, Corinne has been told not to come back......by doctors. They will not accept her as a patient.
 

JennyJenny

Well-Known Member
There are people that think we are contagious or this is sexually transmitted. Now, I do realize that a small subset of ME/CFS patients have activated HPV and EBV and that is an issue but overall we are not contagious/infectious unless we are in the initial viral stage which who knows how long can last. My horrific case of mono was active for months but has never been active again and I do not have active HPV or EBV. I also don't think having activated HPV or EBV necessarily leads to ME/CFS because I do believe we would have a whole lot more people with this illness than we already have. Others who had horrific viruses I am sure were contagious during their viral period but ME/CFS is not in of itself contagious.

I don't necessarily want people hugging or touching me as I am in so much pain and tired but I don't not want them doing it for the wrong reasons either.

And yes, over the years because I pretty much had unexplained illness people thought I had STD's or AIDS. That is emotionally distressing. And people gossip about those kinds of things because people are not nice when it comes to those sorts of diseases and I feel badly for people that do have them because political correctness or not people are not really nice about those things.
 

Tammy7

Well-Known Member
• What stigmas do you deal with on a daily basis from either friends/family/colleagues or doctors/physicians?
Too much judgment on how sick I really am.............I look OK...............they can't comprehend why I can't do more things. Even after explaining how sick I feel........I still get responses like............How come you don't do more things with the family?................Why were you able to go grocery shopping the other day but havn't been over to see me? etc. etc.
• What did you have to go through to get diagnosed?
I was fortunate in that I suspected that I had CFS and found an immunologist/CFS specialist who confirmed the diagnoses. This I believe was within the first year I got sick. He was the most compassionate Dr. I've ever met............have not had that same experience since. I only got to see him two times unfortunately. That was almost 19 years ago.
• Have the stigmas gotten better throughout the years or has it stayed about the same?
Jut a LITTLE better but not by much! .............and this is just with close friends........but again there are times when STILL.......they just don't get it. As far as Dr's go............besides the cfs specialist who'm I saw early on.............I would say not much has changed as far as understanding from Dr.s..........in my case anyway. I am still blown away by how many people that have NOT even heard of this disease.

PS..............Thank you from the bottom of my heart for what you are doing...........we need all the help we can get.............your childhood friend has a good friend indeed. Give him our love.
 
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John Kim

Member
This is all great stuff everyone, it's helping me form strategies for this. It seems like common themes are emerging here:

• Alienation
• Feeling slighted by the system
• A lack of empathy
• Anger
• Helplessness
• Self loathing

These are huge insights that I'm getting.

Now here is where I'm seeing the biggest challenge:

Speaking as someone who has tried to research CFS online throughout the years, I get confused in a convoluted mess -- it seems like we're looking at a classic branding challenge with the disease. Because so little is known about CFS, a clump of diseases and ailments get clumped in that category and each one of those are trying to be defined (from bacterial infections to cystic fibrosis to chronic fatigue to ME to chronic fatigue syndrome).

This is all due to a lack of a proper diagnosis, which is being worked on, and which we want to support.

Now here's the solution I'm seeing:


What if we just go with CFS? It already has a high brand recognition in the media and all of the people affected by any one of those diseases has gone through all of those emotions that are listed above, which are gut wrenching I might add. Including everyone will widen the immediate audience, especially because we'll be looking for a diagnosis.

We'll make the biggest goal of this phase to be all about getting people to understand the anxiety, and to offer a solution to create hope. Say, a tag line like "If you believe". This allows us to market the problem, even to doctors. This also allows us to use it's counter, "I believe", as a thanks to anyone who treats another with CFS with dignity, joins the research movement and/or donates to the cause.

I'm open to all suggestions as I'm still just trying to figure this out, hopefully uniting the diseases wouldn't create a backlash. Also how attached is everyone to the blue ribbon as the symbol?
 

soti

New Member
I'm so excited someone who knows marketing is interested in this problem!

I have to say my first reaction to believe was the Peter Pan thing about clapping your hands if you believe in fairies. But even if people were only clapping their hands for us that would be an improvement. :) It's growing on me.

Stigma... oh, the message that we are lazy. It feels like a failure of imagination to me. And even when there is sympathy they literally can't imagine it. Even someone I've worked with closely for years recently made the comment, "Oh, I didn't realize you were more than just tired." I mean, he knows I'm actually sick and is sympathetic but even he didn't get it.
 

LondonPots

Active Member
Believe = "fairies", quite. Also believe = "duped". I don't want to be 'believed', I want simple scientific facts to smack them over the head with.

How about 'I get it' - as in they've looked at the evidence and it's sunk in, finally. And they don't get it, lucky them - we got it.

Regarding CFS - I think we universally hate it because of everything it represents around poorly designed research and how that allowed governments to dismiss us as a true group. I prefer MECFS.
 

JennyJenny

Well-Known Member
What if we just go with CFS?
Well, if you only want to reach the US, then go with it. AND... those from around the world don't except CFS let alone the patients that have the diagnosis and don't see CFS being researched as having anything to do with them. Some are also here in the US. And the CFS name... that ship may be sailing and SEID may be the name we are getting next. It may be why Congress Zeroed out CFS dollars, we just don't know for sure.

The CDC is going to have CFS broadcasts on NPR over the next few years possibly starting as early as September but that name could change and that may be part of these broadcasts, we just don't know.

So, like one article I saw that had a patchwork quilt-like art of ME and CFS and SEID over and over in square-like patterns, it might behoove you to embrace them all. But beware because there are ME advocates that are going to contact you and they will not he happy.

So, your friend that has ME? In some advocates minds it is not CFS and you are from their viewpoint going to do him a great disservice. Yes, what to do?

I don't like CFS and SEID is only better because Systemic is important in the name and so is DISEASE, of course we are not happy with the EI part but what can we say it actually does express an important part of the disease. We cannot tolerate any exertion. I would hold off on your branding for a few months because the CDC might be branding and you won't be on the same branding page. And people are going to listen to the CDC brand and if you get away from that then you can cause more confusion or from a doctor or specialist viewpoint you don't know your stuff from the get go. Not that the CDC or the doctor's know their stuff while we were suffering and telling them differently, you will be closed off if you don't align yourself to some degree. And it begins with the name.
 
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JennyJenny

Well-Known Member

John Kim

Member
"Believe" could be cheesy, that is true. We just need to come up with a good alternative. I just want it to be as simple as possible, we're trying to communicate with people on a very primitive level. Our tagline is what we want them to do, it's essentially a loose call to action, so it's incredibly important to make that call to action good. I feel like we'd want them to either believe you, understand you, or something else that I'm not thinking of -- whatever it is, the best one would become the tagline.

How about 'I get it' - as in they've looked at the evidence and it's sunk in, finally. And they don't get it, lucky them - we got it.

Regarding CFS - I think we universally hate it because of everything it represents around poorly designed research and how that allowed governments to dismiss us as a true group. I prefer MECFS.
"I get it" feels a little accusatory in tone -- putting people on the defensive directly isn't the best way in my opinion as it creates an unnecessary resistance in the audience, especially to someone who truly has never heard of MECFS before -- you'll lose them right away.

As stated earlier, I essentially I just want talk to the masses on a primitive level: there is a problem that you don't understand, and now that you understand the problem, do/think this way to make a difference in solving the problem. Science can absolutely be incorporated to make someone understand, but it still should speak to us on an animalistic level -- simply. Things like "2.5 million people suffer from MECFS", "more people suffer from MECFS than those who suffer from AIDS" or "Top scientists from around the country believe _______" will all do. If we can show it and not tell it, that's even better.

I don't like CFS and SEID is only better because Systemic is important in the name and so is DISEASE, of course we are not happy with the EI part but what can we say it actually does express an important part of the disease. We cannot tolerate any exertion. I would hold off on your branding for a few months because the CDC might be branding and you won't be on the same branding page. And people are going to listen to the CDC brand and if you get away from that then you can cause more confusion or from a doctor or specialist viewpoint you don't know your stuff from the get go. Not that the CDC or the doctor's know their stuff while we were suffering and telling them differently, you will be closed off if you don't align yourself to some degree. And it begins with the name.
We've gotta find a way to be able to move as fast as possible while holding off on the name then. Maybe we can try to find a way to get in touch (and stay in touch) with someone at the CDC who's working on the new name? I'd like to start taking action on this as fast as possible and to keep momentum growing on it -- we have a huge uphill battle and we're going to have to find ways to adapt to the many hurdles that are going to come our way. Surely we can all find a way.
 

tandrsc

Well-Known Member
I've had this illness for over 30 years and I've noticed some improvement in attitudes over that time.

I recently had a friend apologize for thinking it was all in my head for so many years. My friends are sympathetic and helpful, even if they don't really understand.

Work have also been helpful and have tried to help me with reduced hours and working from home so that I can continue to at least work part-time.

Doctors are a different matter. For nearly 30 years doctors told me there was nothing wrong with me, and then I finally got a diagnosis 4 years ago. So at least I had recognition. However, they still shrug and say there is nothing they can do.

Everyone I mention it to has heard of "ME" and they have a vague idea of what it is. But not many know how bad it can be.
 

Empty

Well-Known Member
@John Kim
http://www.cortjohnson.org/forums/threads/appalled-by-abundant-energy-summit-targeting-m-e.2939/

I started a thread here on this.

Nothing more I can really add. Maybe M.E.Advocacy would be a resource for you also. I do not know much about them.
I don't need placating, tokens, false gestures or emotions validated or to be reassured.

I disagree with your list

"• Alienation
• Feeling slighted by the system
• A lack of empathy
• Anger
• Helplessness
• Self loathing"

Being abused by the system, not feeling slighted by the system.

I don't like 'I believe' words or concepts from that category, it leaves your eyes in a haze and head in a floppy cloud.
'I get it' comes closer and is a better concrete example. How is it accusatory in tone?

Can you provide a few examples of current successful marketing taglines in other illnesses?
 

Kyla

New Member
I see this is in PDF in drop box. Is this something I can post somewhere else?
Hi Jenny,
Yes I believe Mary Dimmock has given permission for this to be spread widely. If you want permission to do something specific with it you could try emailing her:

" The community is welcome to use it if it's of benefit in their advocacy efforts. The document can be accessed at http://bit.ly/The_Burial_of_ME.

Comments are welcome and can be sent to medimmock@gmail.com. I will do my best to respond.”

From here:
http://forums.phoenixrising.me/index.php?threads/thirty-years-of-disdain-how-hhs-buried-me.37318/
 

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