No Longer Naive in the Ways of The Beast

May 5, 2014

After having lived for years with ME/CFS, Jody Smith learned there’s more to this beast of an illness than she realized, and that what might help one person may not help others …

pixabay-question-markWhen I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS.

I guess I thought that whatever it was that I had was what you had … what they had … what that person laying on their face over there had …

Turns out I couldn’t have been more wrong.

I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.

Yeah. Kind of naive.

I started supplying free articles on ME/CFS to EmpowHER, the women’s health and wellness website I would go on to write and edit for full-time.

The reception I received was so welcoming and encouraging, and writing about the things that I needed so badly to express was so therapeutic, that my words poured from fingertips to keyboard like rivers.

This led me to start my website Ncubator, as the torrents of words kept flowing for weeks and months.

I met many amazing people online through Ncubator, EmpowHER, and then through Phoenix Rising after joining the forums. In my naïveté I would send emails full of the things that worked for me, expecting the same results to happen for the sick people I was writing to.

It was a shock to hear over and over that many of these things had already been tried without success.

As I mulled this over, I saw in a new light that this illness takes many different forms, and what works for one may not work for another, in fact it might make them sicker.

The low carb diet that helped me so much was no good for a lot of people I talked to. Some couldn’t handle meat or fat at all. Others did best with a more vegetarian or heavier carb approach that would have left me in the dust. Live and learn.

I’d have said I knew how enormous and daunting this monster illness was, but after this experience I was struck by the fact that if anything it was bigger and more malevolent than I had previously realized.

I also saw that as sick as I had been — unable to think or communicate, unable to get out of bed, or use crippled hands and arms, or make my fingers work — there were people who were sicker than I had ever been.

And as poor and as isolated as I had been, there were other folks who had less money, fewer resources and less help than I had had at my worst.

Some had no homes, due to financial reasons, others because their chemical sensitivities made it impossible to live inside. Some were too ill to go out of their homes, others were too sick to be able to go into one.

When my son Jesse got sick, most of the things that had helped me to creep towards health seemed to do nothing at all for him. His path has been slower and harder than mine was, despite the experience I’d already had for years before he fell ill.

I used to call ME/CFS my mystery disease, during the early years when I had no idea what I was dealing with or how to deal with it. Now I saw that no matter what I called it, this mystery disease presented itself in so many different forms, and responded — or didn’t respond — in seemingly contradictory ways from one patient to another.

Mind you, there were other people who I talked with who did find relief through some of the things I suggested. I was always surprised and pleased when this would happen.

ME/CFS is a beast and seemingly a chameleon to boot. But we will beat it. We will continue to learn about this illness, ideally with help from scientists and doctors who are in our corner.

Maybe one day we’ll even get help from some of the people in high places who have never been in our corner but who will eventually knuckle under to pressure to finally care for the sick. Hey. It could happen.

Meanwhile, we will continue to share our stories with each other, listen to each other, and pass on the things that help us heal, knowing that some of this will make a difference.

And even when the solutions have not been found for this person or that one, for this symptom or that, we will continue to be there for each other. Even when all we can say is that it sucks, and that we are thinking of them, we are making a difference for each other.

At least for those of us with the good fortune of being online, Phoenix Rising has been doing all of this, to the best of all our abilities as we try to make each others’ lives better, as we try to lift the fear and the heavy weight of this beast of a disease. The isolation and loneliness, living outside the camp in the wilderness, is lessened, becomes easier to bear.

We may not always know what to suggest to a sick friend. In fact maybe most of the time we won’t know what to suggest. But the fact that we care enough to try, and respond to each other with care and consideration, makes a difference. One that not too many years ago didn’t exist for many of us. Including me. And probably including you.

 Support Phoenix Rising

Phoenix Rising is a registered 501 c.(3) non profit.  We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

donate

37 comments

{ 37 comments… read them below or add one }

Cheesus May 5, 2014 at 7:48 am

When I first got ill, my GP – who is no expert in CFS/ME – told me that the the word 'syndrome' was applied to indicate simply a collection of symptoms at which people arrive from all sorts of different directions. This has stuck with me and is validated in my mind every time I see the heterogeneity of the illness: from symptoms, to severity, to treatments, to prognosis.

Maybe 'ME' is one solid thing as people claim, but what I see generally is a lot of people suffering deeply in a vague, grey area of illness – sharing some commonalities with others but all unique in many ways. Taking another's story and applying it to myself is useless under these circumstances.

Good article :thumbsup: and I am pleased to hear you are doing well.

soofke May 5, 2014 at 9:10 am

@ least to you they listen ;(

Dreambirdie May 5, 2014 at 9:39 am

Thanks Jody for your honesty and clarity. I always enjoy your articles.

Jody May 5, 2014 at 10:38 am
Cheesus

When I first got ill, my GP – who is no expert in CFS/ME – told me that the the word 'syndrome' was applied to indicate simply a collection of symptoms at which people arrive from all sorts of different directions. This has stuck with me and is validated in my mind every time I see the heterogeneity of the illness: from symptoms, to severity, to treatments, to prognosis.

Maybe 'ME' is one solid thing as people claim, but what I see generally is a lot of people suffering deeply in a vague, grey area of illness – sharing some commonalities with others but all unique in many ways. Taking another's story and applying it to myself is useless under these circumstances.

Good article :thumbsup: and I am pleased to hear you are doing well.

Yup, we're a big old, messy grab bag of symptoms, every bag is different.:)

Thanks Cheesus.

Jody May 5, 2014 at 10:39 am
soofke

@ least to you they listened ;(

Don't let it get you down when people don't take your suggestions soofke. Everybody's dealing with their challenges the best they know how. :)

Jody May 5, 2014 at 10:40 am
Dreambirdie

Thanks Jody for your honesty and clarity. I always enjoy your articles.

Thanks db.:)

aimossy May 5, 2014 at 7:59 pm

Refreshing read!
Thanks Jody.

Jody May 5, 2014 at 8:07 pm

Glad you enjoyed it, aimossy.:)

Sing May 5, 2014 at 10:25 pm

I appreciate how you show caring for people and remind us of its value. Yes, isolation, being out there and failing with ideas for treatment–I have had all those experiences often. These forums have helped me greatly to have a sense of other people who understand from the inside out what it is like. I have gained in confidence to claim my reality with this illness. That has helped with medical people. Not only have I gained a foothold with them, they have stopped their denying, patronizing, minimizing, projecting and misinterpreting me and my experience. When you are isolated, it is hard to claim your reality. We are such social beings–that is just how it seems to work. So even when we can't find or offer each other effective remedies, we do offer and can find this precious support. This strengthens us for the battle and can bring joy through the sharing.

taniaaust1 May 5, 2014 at 11:32 pm

I think that is what I like about your articles the most Jody, your honesty.

Marco May 6, 2014 at 2:37 am
Cheesus

When I first got ill, my GP – who is no expert in CFS/ME – told me that the the word 'syndrome' was applied to indicate simply a collection of symptoms at which people arrive from all sorts of different directions. This has stuck with me and is validated in my mind every time I see the heterogeneity of the illness: from symptoms, to severity, to treatments, to prognosis.

Maybe 'ME' is one solid thing as people claim, but what I see generally is a lot of people suffering deeply in a vague, grey area of illness – sharing some commonalities with others but all unique in many ways. Taking another's story and applying it to myself is useless under these circumstances.

Good article :thumbsup: and I am pleased to hear you are doing well.

Well said!

Izola May 6, 2014 at 3:40 am

The CDC changed the name Myalgic Encephalomyelitis to "chronic fatigue syndrome" and strung a mishmash of symptoms with their privately stated hope and understanding that a lot of other illnesses including depression, would end up in the bag diluting the symptoms of M.E. in research samples and in doctor's minds thus never getting research nor treatment traction.

Using the word "fatigue" was their big joke. Who would respect a disease with "fatigue" in its name? And Syndrome? They knew as we all found out that it was a bunch of symptoms strung together, not a delineated disease. They also knew that the whole combination of the name and the dilution would tag us as mental and lazy.

Their "How to hide an epidemic in plain sight" worked for almost 3 decades. Hey, it's still working. Now things are so complex with all of us smudged together under one name it will take another Einstein to untangle the web.

Their sick joke is a major major part of the IOM/HHS debacle. Lay people, with the big nudge from greedy shrinks think we are nuts. And probably so will the majority of the IOM panel. Won't it be dandy when all many can get is anti-depressives and exercise?

Hopefully things have progressed far enough, thanks to our experts, and all you brilliant biochemists and microbiologists that it won't be that bad.

The CDC guys had years of chuckling about the wool they pulled over the world's eyes. Our experts stuck with us, knowing what had been done and narrowed the research cohorts in much of their research as best as they could.

But for our experts, genius patients and the few blinded kind physicians who help us we could be at the turn of last century, not this one.

We are not all of one disease, but in many ways the similarities are more fascinating than the differences. In truth, we need sorting for everyone's benefit. Imagine all of us who may have one simple little thing to fix but it was overlooked because of all the misguidance given out by the CDC. And all the opportunities for a cure or at least a reprieve because of the CDC's and HHS's games and the FDA's failure to fund. 20%of nothing is still nothing. Let us hope that we get something.

"Osler's Web" by Hilary Johnson is a very very good read. The best researched and written investigative Journalism of last century. [But with a nod to Edward Humes on Matamoris -- (don't ask,)]

Thank you Jody for lightening my heavy heart. You make me :):D:).

How did I get here from there? :(;):);):(:bang-head: Iz

Jody May 6, 2014 at 7:31 am
Sing

I appreciate how you show caring for people and remind us of its value. Yes, isolation, being out there and failing with ideas for treatment–I have had all those experiences often. These forums have helped me greatly to have a sense of other people who understand from the inside out what it is like. I have gained in confidence to claim my reality with this illness. That has helped with medical people. Not only have I gained a foothold with them, they have stopped their denying, patronizing, minimizing, projecting and misinterpreting me and my experience. When you are isolated, it is hard to claim your reality. We are such social beings–that is just how it seems to work. So even when we can't find or offer each other effective remedies, we do offer and can find this precious support. This strengthens us for the battle and can bring joy through the sharing.

Sing,

You said, "When you are isolated, it is hard to claim your reality." That says it so well. Sounds like you could write an article on that.:)

Jody May 6, 2014 at 7:34 am
taniaaust1

I think that is what I like about your articles the most Jody, your honesty.

Thanks Taniaaust1.:)

On another note entirely, what came into my head as you credited my honesty was, "You can't make this stuff up." :) Well, maybe somebody could. But why would you?

It's nice to have a place to come with my words and my thoughts and have them heard and received. For so long, as I'm sure it is for many of us, nobody was interested in what I was thinking, or experiencing. So … thank you for caring. :) All of you.

Jody May 6, 2014 at 7:42 am
Izola

The CDC changed the name Myalgic Encephalomyelitis to "chronic fatigue syndrome" and strung a mishmash of symptoms with their privately stated hope and understanding that a lot of other illnesses including depression, would end up in the bag diluting the symptoms of M.E. in research samples and in doctor's minds thus never getting research nor treatment traction.

Using the word "fatigue" was their big joke. Who would respect a disease with "fatigue" in its name? And Syndrome? They knew as we all found out that it was a bunch of symptoms strung together, not a delineated disease. They also knew that the whole combination of the name and the dilution would tag us as mental and lazy.

Their "How to hide an epidemic in plain sight" worked for almost 3 decades. Hey, it's still working. Now things are so complex with all of us smudged together under one name it will take another Einstein to untangle the web.

Their sick joke is a major major part of the IOM/HHS debacle. Lay people, with the big nudge from greedy shrinks think we are nuts. And probably so will the majority of the IOM panel. Won't it be dandy when all many can get is anti-depressives and exercise?

Hopefully things have progressed far enough, thanks to our experts, and all you brilliant biochemists and microbiologists that it won't be that bad.

The CDC guys had years of chuckling about the wool they pulled over the world's eyes. Our experts stuck with us, knowing what had been done and narrowed the research cohorts in much of their research as best as they could.

But for our experts, genius patients and the few blinded kind physicians who help us we could be at the turn of last century, not this one.

We are not all of one disease, but in many ways the similarities are more fascinating than the differences. In truth, we need sorting for everyone's benefit. Imagine all of us who may have one simple little thing to fix but it was overlooked because of all the misguidance given out by the CDC. And all the opportunities for a cure or at least a reprieve because of the CDC's and HHS's games and the FDA's failure to fund. 20%of nothing is still nothing. Let us hope that we get something.

"Osler's Web" by Hilary Johnson is a very very good read. The best researched and written investigative Journalism of last century. [But with a nod to Edward Humes on Matamoris -- (don't ask,)]

Thank you Jody for lightening my heavy heart. You make me :):D:).

How did I get here from there? :(;):);):(:bang-head: Iz

Yep, Izola,

All that is true. It is a heck of a life to get stuck with. None of us expected to end up chained to this mess that's for sure.

I suspect that I would be one of that minority you mentioned that had a few things that could be treated — all evidence seems to indicate that, it's been naturopathy in the main that's been helping me find my way out. But having been thrown in the garbage can marked CFS … well that could have been my demise right there.

Mind you, in my case, conventional medicine just wasn't offering any workable solutions anyway. That's one of the other flip sides to all this misery. For some of us, those who are similar to me, a few acupuncture needles, a few supplements, a change in diet, some chiropractic … no matter the diagnosis (or lack of one) conventional medicine was never going to offer me those things that apparently I needed to start to become well.

If I've helped to lighten that heavy heart of yours, I am also :):D:).

liverock May 6, 2014 at 4:41 pm
Jody

It's nice to have a place to come with my words and my thoughts and have them heard and received. For so long, as I'm sure it is for many of us, nobody was interested in what I was thinking, or experiencing. So … thank you for caring. :) All of you.

When I first found PR some years ago it was so refreshing to have somewhere to go where people were pouring out their stories, thoughts and emotions probably to fellow sufferers for the first time.
What a relief it was to talk to others with this wretched disease without getting the feeling that people were secretly thinking " well you dont look ill'

Another thing that struck me was how I was made to feel at home by someone who appeared to be the 'Head Greeter', sending out individual welcoming messages, commiserating with those who were feeling low, remembering peoples birthdays by sending them a cheerful message and last but not least directing people to the 'Burnout Bench'.:)

For those who have been here from early days you will recognise of course it was Jody.

I thought at first she was someone who was in good health and was just helping out. When I read her story of course it soon became apparent that she was far from being well, which amazed me that she put so much into the life of the forum whilst being so ill.

So Jody.. thank you for all the people you have helped here since those early days by your work and writing, which has helped so many by putting into words their thoughts and always giving them a positive vision. Keep those articles coming! :hug:

Jody May 6, 2014 at 5:10 pm

Aww, how darned sweet is that, Liverock.:)

I read it to my son and husband and we all three teared up over it.

Thank you.:)

Izola May 7, 2014 at 1:02 am
Jody

Yep, Izola,

All that is true. It is a heck of a life to get stuck with. None of us expected to end up chained to this mess that's for sure.

I suspect that I would be one of that minority you mentioned that had a few things that could be treated — all evidence seems to indicate that, it's been naturopathy in the main that's been helping me find my way out. But having been thrown in the garbage can marked CFS … well that could have been my demise right there.

Mind you, in my case, conventional medicine just wasn't offering any workable solutions anyway. That's one of the other flip sides to all this misery. For some of us, those who are similar to me, a few acupuncture needles, a few supplements, a change in diet, some chiropractic … no matter the diagnosis (or lack of one) conventional medicine was never going to offer me those things that apparently I needed to start to become well.

If I've helped to lighten that heavy heart of yours, I am also :):D:).

You are a heart lightener! I am so happy you do not have M.E. I understand you have been lightening hearts for eons. Bless you child, well, woman. :angel::angel::angel::hug::angel::angel::angel:

I don't really carry a heavy heart, just heavy problems. I'm the one who goes about occasionally yelling, "Hey, the King has no clothes!!"

While jn practice I got a lot of, "Hey, we can't do that." and me responding "I just did." I got a lot of attaboys afterwards, but not much money! The memories are wonderful.

SquidProQuo May 7, 2014 at 1:20 am

This is a wonderful article and puts into words exactly how I am feeling right now having dramatically and suddenly improved (which has allowed me the energy to really delve deeply into this site).

The more time I spend here, the more I understand the set of "CFS" shot ones to be the body's expression of discontent in the face of not one, but many illnesses.

I am humbled by the stories of others who have suffered in ways I didn't, and to degrees I cannot imagine…

I can say I know what is "working" for me… I do know what I am doing and what coincided with improvement. But the ascent to wellness mirrors the dr cent to illness in that it accelerates. Amazing things start to happen quickly when you have the energy to feed yourself, I NEVER in a million years though I would be able to build physical condition through activity.

Acceptance has been crucial for me too. And I'm stubborn as hell so I come very late to the acceptance party.

I know that what I'm doing/taking isn't the answer for you all. But I also know that I do really want to help and serve other people who are ill with these symptoms. As my energy increases, I wonder– what can I do for you?

MeSci May 7, 2014 at 2:01 am
Izola

Who would respect a disease with "fatigue" in its name? And Syndrome?

Some 'syndromes' do get taken seriously, such as AIDS and Down's Syndrome.

Good post though, and Jody's of course!

I am puzzled though about how and why governments are so often so blind to reality and fact. They seem to be taken in by powerful influences who have an agenda. This also happens in many other situations, such as parts of the food industry trying to hush up info about the dangers of their products, and a strong farming lobby in the UK being allowed to override scientific findings (often from government-commissioned, taxpayer-funded research!).

So governments make policy decisions which are not based on the best evidence. How can this be fixed?

EDIT – after a little thought I have realised that this is a huge topic and would really need its own thread!

MeSci May 7, 2014 at 2:16 am
Jody

Thanks Taniaaust1.:)

On another note entirely, what came into my head as you credited my honesty was, "You can't make this stuff up." :) Well, maybe somebody could. But why would you?

Because we are mentally ill with delusions, and very clever with it so as to seem extremely logical and plausible, except to those brilliant psychs who have seen through our trickery…and it's virtually impossible to prove them wrong. :rolleyes:

Liz May 7, 2014 at 12:39 pm

And even when the solutions have not been found for this person or that one, for this symptom or that, we will continue to be there for each other. Even when all we can say is that it sucks, and that we are thinking of them, we are making a difference for each other.
Well Said, Jody! This is a marvelous article because as patients we want with our whole hearts to heal, and failing that, we want to heal everybody else. We want there to be a reason why a treatment works, find a cure and move on ahead. It is an arduous journey to realize that the word "incurable" might after all be true. It's such an unsatisfactory truth — I might have to endure this illness without really knowing how to help myself, or anyone else, get the elusive cure. But you're right — we acknowledge one another and we endure. For now, that must be enough. Thank you!

Jody May 7, 2014 at 7:49 pm
Izola

You are a heart lightener! I am so happy you do not have M.E. I understand you have been lightening hearts for eons. Bless you child, well, woman. :angel::angel::angel::hug::angel::angel::angel:

I don't really carry a heavy heart, just heavy problems. I'm the one who goes about occasionally yelling, "Hey, the King has no clothes!!"

While jn practice I got a lot of, "Hey, we can't do that." and me responding "I just did." I got a lot of attaboys afterwards, but not much money! The memories are wonderful.

Izola,

Maybe not for eons, but… thank you.:)

Attaboys are great … money is too.:)

Jody May 7, 2014 at 7:50 pm
SquidProQuo

This is a wonderful article and puts into words exactly how I am feeling right now having dramatically and suddenly improved (which has allowed me the energy to really delve deeply into this site).

The more time I spend here, the more I understand the set of "CFS" shot ones to be the body's expression of discontent in the face of not one, but many illnesses.

I am humbled by the stories of others who have suffered in ways I didn't, and to degrees I cannot imagine…

I can say I know what is "working" for me… I do know what I am doing and what coincided with improvement. But the ascent to wellness mirrors the dr cent to illness in that it accelerates. Amazing things start to happen quickly when you have the energy to feed yourself, I NEVER in a million years though I would be able to build physical condition through activity.

Acceptance has been crucial for me too. And I'm stubborn as hell so I come very late to the acceptance party.

I know that what I'm doing/taking isn't the answer for you all. But I also know that I do really want to help and serve other people who are ill with these symptoms. As my energy increases, I wonder– what can I do for you?

SquidProQuo,

Lovely words. Thanks:)

Jody May 7, 2014 at 7:50 pm
MeSci

Because we are mentally ill with delusions, and very clever with it so as to seem extremely logical and plausible, except to those brilliant psychs who have seen through our trickery…and it's virtually impossible to prove them wrong. :rolleyes:

MeSci,

lol Yup, that about sums us up.:)

Jody May 7, 2014 at 7:52 pm
Liz

And even when the solutions have not been found for this person or that one, for this symptom or that, we will continue to be there for each other. Even when all we can say is that it sucks, and that we are thinking of them, we are making a difference for each other.
Well Said, Jody! This is a marvelous article because as patients we want with our whole hearts to heal, and failing that, we want to heal everybody else. We want there to be a reason why a treatment works, find a cure and move on ahead. It is an arduous journey to realize that the word "incurable" might after all be true. It's such an unsatisfactory truth — I might have to endure this illness without really knowing how to help myself, or anyone else, get the elusive cure. But you're right — we acknowledge one another and we endure. For now, that must be enough. Thank you!

Liz,

Yes. At the very least we acknowlege each other, and that is no small thing. Especially since for so many of us, acknowledgement is so rare from the rest of the world, or even our families sometimes.

Thanks:)

Misfit Toy May 8, 2014 at 6:37 pm

Jody, thank you for pointing this out. I often feel like over the years, people will recommend something for me to try and if it doesn't work they are almost mad at me, or just don't get it. Everyone is different with a different chemical makeup, etc and I find it so hard to understand why people can't understand how they may be able to take something, but others can't take the very same thing.

I recently did IVIG therapy and before that subQ. A woman mentioned how she really didn't get why I didn't like subQ..sticking 3 needles into myself (hurt like hell.) She could do it, so shouldn't I be able to and that basically I was taking a moment or time in my life as crisis and allowing it to basically color the new treatment in a bad way. I was having a lot of family problems and my mom's health was suffering and she felt that this could be impacting my treatment because basically I had a negative attitude. Her words via email hurt me and I couldn't believe this was coming from another ill person with CFS. Anyone who is sick themselves with an illness, working and then on top of that helping out an aging parent is going to be…..down and scared and especially with a new diagnosis of CVID and a treatment that is lifelong.

I have realized that just because someone has CFS does not mean that person will get you, understand you, or validate your situation. That can be okay, providing they do not feel the need to hurt you by saying nasty things because you can't handle what they so easily can handle.

Anyway, thank you for your compassion and may many who read this article pick up on that and feel the same way when others can't take, or handle what they so easily can. It's not about being negative, it's about a different body makeup.

Ema May 8, 2014 at 7:02 pm
Misfit Toy

I recently did IVIG therapy and before that subQ. A woman mentioned how she really didn't get why I didn't like subQ..sticking 3 needles into myself (hurt like hell.) She could do it, so shouldn't I be able to and that basically I was taking a moment or time in my life as crisis and allowing it to basically color the new treatment in a bad way. I was having a lot of family problems and my mom's health was suffering and she felt that this could be impacting my treatment because basically I had a negative attitude. Her words via email hurt me and I couldn't believe this was coming from another ill person with CFS. Anyone who is sick themselves with an illness, working and then on top of that helping out an aging parent is going to be…..down and scared and especially with a new diagnosis of CVID and a treatment that is lifelong.

I have realized that just because someone has CFS does not mean that person will get you, understand you, or validate your situation. That can be okay, providing they do not feel the need to hurt you by saying nasty things because you can't handle what they so easily can handle.

Anyway, thank you for your compassion and may many who read this article pick up on that and feel the same way when others can't take, or handle what they so easily can. It's not about being negative, it's about a different body makeup.

Or maybe you just totally misread the situation and the person was actually really trying to help you through a hard time and you are so used to being let down by people that you just couldn't see it and reacted in a knee jerk negative fashion to sentiments given from a place of true compassion and understanding.

She might have really understood how stressful everything you were going through was for you and how that definitely would impact your tolerance level for yet *more* stress – like the stress of starting IVIG with a doctor that was proving to be a bit clueless – and that you might want to take that into consideration before throwing away a treatment that might turn out to prove to have long term benefit.

It's hard enough to honestly evaluate a difficult treatment like IVIG with so many confounding factors involved, like trying to take care of an ill parent. I think most of us here would agree that starting a difficult new treatment while under a great deal of stress might not be the best timing for a good trial of that treatment. And that deciding that it doesn't work in that same time period might also be short sighted.

I know I personally never think another person can do or handle something just because I can, but I also know that sometimes a little encouragement goes a lot further when someone is starting out and discouraged, especially when they know that it is a long and bumpy road already. It's unfortunate if someone else takes that *encouragement* to go for it and keep trying to be "nasty" or "not understanding" and is very hurtful to the other person who is using her own limited energy trying to help a complete stranger as well.

Misfit Toy May 8, 2014 at 7:49 pm

"Or maybe you just totally misread the situation and the person was actually really trying to help you through a hard time and you are so used to being let down by people that you just couldn't see it and reacted in a knee jerk negative fashion to sentiments given from a place of true compassion and understanding."

That's a lot of psychoanalyzing going on there Ema. Do you even know this person? Have you talked to them on the phone or is this just…..you sizing them up via….?????

Not sure. But, since I am that person and I really don't like to be analyzed, I would have to say….nope. Not it.

Too many opinions about a situation from someone who is not me and only has a bird's eye view. But I guess that's what happens when people study to be in psychology?

They become psychologists.

xchocoholic May 9, 2014 at 2:46 am

Great article @Jody.

I visit PR to help deal with my feelings of isolation. When I became ill in 1990, the only articles I could find on "cfs" were at the library and I really didn't feel well enough to go. Having access to great info and fellow pwcs at my fingertips has lifted that burden. :)

On a side note, I've found sharing what has helped me has been met with both gratitude and hostility. And sometimes in the same sentence. Lol. I know I react this way sometimes when people, even doctors, offer me advice so I get it.

For me, the frustration of trying to comprehend what was said gets in the way of being polite. I've learned to accept that that person was just trying to help and silence would've meant they didn't care. Even if I don't remember to acknowledge this later.

Tc .. x

Jody May 9, 2014 at 7:00 pm
xchocoholic

Great article @Jody.

I visit PR to help deal with my feelings of isolation. When I became ill in 1990, the only articles I could find on "cfs" were at the library and I really didn't feel well enough to go. Having access to great info and fellow pwcs at my fingertips has lifted that burden. :)

On a side note, I've found sharing what has helped me has been met with both gratitude and hostility. And sometimes in the same sentence. Lol. I know I react this way sometimes when people, even doctors, offer me advice so I get it.

For me, the frustration of trying to comprehend what was said gets in the way of being polite. I've learned to accept that that person was just trying to help and silence would've meant they didn't care. Even if I don't remember to acknowledge this later.

Tc .. x

Xchocoholic

When I got ill in 1992 we didn't have a computer let alone internet, and so I had nothing at all to work with. Even after we got online in the late 90s, and then the early 21st century (that sounds weird:) though I could find some articles, little of it was useful, most of it was written in jargon way over my head and most of it just scared the wits out of me.

Actually, it wasn't until I found Cort Johnson's Phoenix Rising website (before he had started this forum I think) that I found much that was intelligible to me, and that had any relevance at all to my life.

Things are still not what they should be but there is at least alot more on the net that is worth reading and that offers some benefit for us.

Reactions can be complex and seemingly contradictory at times. Chalk it up to all of us having too much to deal with.

MeSci May 10, 2014 at 7:03 am
Jody

Xchocoholic

When I got ill in 1992 we didn't have a computer let alone internet, and so I had nothing at all to work with. Even after we got online in the late 90s, and then the early 21st century (that sounds weird:) though I could find some articles, little of it was useful, most of it was written in jargon way over my head and most of it just scared the wits out of me.

Actually, it wasn't until I found Cort Johnson's Phoenix Rising website (before he had started this forum I think) that I found much that was intelligible to me, and that had any relevance at all to my life.

Things are still not what they should be but there is at least alot more on the net that is worth reading and that offers some benefit for us.

Reactions can be complex and seemingly contradictory at times. Chalk it up to all of us having too much to deal with.

Sites like this, and the internet in general, may be saving many people from making the errors us long-termies made, so they may be able to avoid getting worse. I got ill in 1995 when the only advice I got was to exercise, and the only reactions I got were that there was nothing wrong with me, or that it was all in my mind, or all my fault. It was rarely explicit, but no one seemed to take it seriously or give me correct advice.

Sadly this still seems to be the case for most people, at least from those in power, friends, family, doctors, etc.

lookinglass May 10, 2014 at 8:02 am
Izola

The CDC changed the name Myalgic Encephalomyelitis to "chronic fatigue syndrome" and strung a mishmash of symptoms with their privately stated hope and understanding that a lot of other illnesses including depression, would end up in the bag diluting the symptoms of M.E. in research samples and in doctor's minds thus never getting research nor treatment traction.

Using the word "fatigue" was their big joke. Who would respect a disease with "fatigue" in its name? And Syndrome? They knew as we all found out that it was a bunch of symptoms strung together, not a delineated disease. They also knew that the whole combination of the name and the dilution would tag us as mental and lazy.

Their "How to hide an epidemic in plain sight" worked for almost 3 decades. Hey, it's still working. Now things are so complex with all of us smudged together under one name it will take another Einstein to untangle the web.

Their sick joke is a major major part of the IOM/HHS debacle. Lay people, with the big nudge from greedy shrinks think we are nuts. And probably so will the majority of the IOM panel. Won't it be dandy when all many can get is anti-depressives and exercise?

Hopefully things have progressed far enough, thanks to our experts, and all you brilliant biochemists and microbiologists that it won't be that bad.

The CDC guys had years of chuckling about the wool they pulled over the world's eyes. Our experts stuck with us, knowing what had been done and narrowed the research cohorts in much of their research as best as they could.

But for our experts, genius patients and the few blinded kind physicians who help us we could be at the turn of last century, not this one.

We are not all of one disease, but in many ways the similarities are more fascinating than the differences. In truth, we need sorting for everyone's benefit. Imagine all of us who may have one simple little thing to fix but it was overlooked because of all the misguidance given out by the CDC. And all the opportunities for a cure or at least a reprieve because of the CDC's and HHS's games and the FDA's failure to fund. 20%of nothing is still nothing. Let us hope that we get something.

"Osler's Web" by Hilary Johnson is a very very good read. The best researched and written investigative Journalism of last century. [But with a nod to Edward Humes on Matamoris -- (don't ask,)]

Thank you Jody for lightening my heavy heart. You make me :):D:).

How did I get here from there? :(;):);):(:bang-head: Iz

I live in the Canary Islands, an autonomous region of Spain. My young Spanish GP whom I visited yesterday had never heard of the words Myalgic Encephalomyelitis, even though I wrote it down for her. But she knew about Chronic Fatigue which she kinda dismissed. Not a very hopeful encounter for me. It means I must look out for a Private Doctor.

Jody May 10, 2014 at 8:20 am
MeSci

Sites like this, and the internet in general, may be saving many people from making the errors us long-termies made, so they may be able to avoid getting worse. I got ill in 1995 when the only advice I got was to exercise, and the only reactions I got were that there was nothing wrong with me, or that it was all in my mind, or all my fault. It was rarely explicit, but no one seemed to take it seriously or give me correct advice.

Sadly this still seems to be the case for most people, at least from those in power, friends, family, doctors, etc.

MeSci,

In the early days, everything I did was wrong. I have learned everything that I have learned the hard way. Hopefully we can save the newbies to ME/CFS from going through as many years of doing the wrong things, and maybe they will only be briefly in ME/CFS land.

And maybe eventually the good advice that has been helpful to at least some of us, and the basic good advice that works to some degree for all of us — like get off your feet, sleep as much as you can, look to your diet for possible issues, etc. — will be all over the internet, and will have pushed out and drowned out the really crappy advice we started out with back then.

That's one of our aims, eh? Is to go from being voiceless and ignored, to being the voice of reason that is heard by people who are sick and stumbling around looking for help. Better they find us than the sources we all started out with years ago.

Jody May 10, 2014 at 8:24 am
lookinglass

I live in the Canary Islands, an autonomous region of Spain. My young Spanish GP whom I visited yesterday had never heard of the words Myalgic Encephalomyelitis, even though I wrote it down for her. But she knew about Chronic Fatigue which she kinda dismissed. Not a very hopeful encounter for me. It means I must look out for a Private Doctor.

Lookinglass,

I'd love to visit Spain and the Canary Islands some day. But I can only imagine how difficult it is to live there with this illness.

That wasn't a very promising encounter. It sounds very much like my experience with my doctor in Canada though. He was never any use to me. Thank goodness he has retired.

Do you have naturopaths where you live? My personal experience with a naturopath has been fruitful, and nothing related to conventional medicine has ever done me any good.

I think the majority of us don't get much help from doctors. Self-diagnosis, identifying our own symptoms and trying different things for them, is the path many of us are on. There are a lot of threads on Phoenix Rising that offer up information that might be of help to you.

GcMAF Australia July 21, 2014 at 5:22 am

Thank you @Jody.
I am in contact with many lyme sufferers, and they go through these difficulties.
Even small improvements can be a major victory.
and certainly the recognition of these diseases needs to be greatly improved, and the politics improved.
There is a major project planned over the next 12 months or so in the US.
Slowly, slowly we gain strength and get more medicos on our side.
http://www.actionlyme.org/
This is an All Groups Occupy: Chronic Fatigue, Autism Parents, Psych Rights advocates, Gulf War Illnesses, "Lyme Disease," Fibromyalgia

I would go so far as to say anew approach is needed for all, including cancer, diabetes, cardiovascular people etc.
Thank you all and regards

Leopardtail August 8, 2014 at 5:27 pm
Jody

Xchocoholic

When I got ill in 1992 we didn't have a computer let alone internet, and so I had nothing at all to work with. Even after we got online in the late 90s, and then the early 21st century (that sounds weird:) though I could find some articles, little of it was useful, most of it was written in jargon way over my head and most of it just scared the wits out of me.

Actually, it wasn't until I found Cort Johnson's Phoenix Rising website (before he had started this forum I think) that I found much that was intelligible to me, and that had any relevance at all to my life.

Things are still not what they should be but there is at least alot more on the net that is worth reading and that offers some benefit for us.

Reactions can be complex and seemingly contradictory at times. Chalk it up to all of us having too much to deal with.

I got in 1975, no computer, no internet access outside universities

Previous post:

Next post: