splodgenoodles: (Default)
It looks as though the next attempt at finding a drug to avoid (or at least delay) the removal of my innards is probably weeks away, rather than months.

I just got in touch with the research assistant, as I hadn't heard anything for a while. She said they were within a month to start up, I take that to mean within a couple of months, she laughed and said no.

But of course that's a month for them to get the go ahead, then a while before I actually get started on anything. But still, it's not months and months. Just maybe a couple.

The drug on trial is ustekinumab, sold as Stelara. It is presently prescribed for chronic plaque psoriasis.

I assume it's the same as last time - double blind, placebo controlled. After the initial trial, it's open label. Unless it's a bust like last time, in which case they'll presumably just pull the plug.

This will be my third clinical trial. It's probably my last chance for finding an alternative to prednisolone other than surgery - time is passing. I do expect that if it works, the most it will offer is a bit more time.

This is because loss of efficacy is a feature of drugs in this class. I've been through the ones already available for Crohn's Disease and for me(as for many others) they've worked only for a short period. Hence the constant rolling out and testing of different variations, and dosing strategies to delay/avoid resistance.

~~~

I am sitting on the couch waiting for someone to turn up to discuss council services with me. She's late, which is no big deal but is unusual - these folk are usually dead on time. I'm unwashed and still in my PJs. I feel a bit bad about this, but that's just how things are today. Hard to tell whether it helps or hinders my request for help.

You'd be surprised. Looking like shit doesn't help as much as you might think. Sometimes it reduces your 'likeability', sometimes people need to feel kinship with you to want to help and if you stink, they don't. But other times, what with your disabilities being invisible to the naked eye, scrubbing up - if only for the sake of your own self esteem - means they can't see the problem. I speak here as someone who has been on both sides of the relationship.
splodgenoodles: (Default)
Now is your chance!

People everywhere dream that they could bask in the glamour, revel in the adulation and wear my underpants*, if only for a few measly hours.

And now they can.




Regular, common, garden variety people are invited to attend this.

Rally for Research

12:45 - 2PM at the State Library.


You will be there to represent the special glamour that is life in the house of Noodles.

YOU WILL BE THE NOODLE!



*Underpants only provided on request. No guarantee of arrival prior to event. Underpants become the property of the recipient and may not be returned. Proof of attendance at event is required.


~~~~~~~~~~~~~~~~
splodgenoodles: (Default)
Now is your chance!

People everywhere dream that they could bask in the glamour, revel in the adulation and wear my underpants*, if only for a few measly hours.

And now they can.




Regular, common, garden variety people are invited to attend this.

Rally for Research

12:45 - 2PM at the State Library.


You will be there to represent the special glamour that is life in the house of Noodles.

YOU WILL BE THE NOODLE!



*Underpants only provided on request. No guarantee of arrival prior to event. Underpants become the property of the recipient and may not be returned. Proof of attendance at event is required.


~~~~~~~~~~~~~~~~
splodgenoodles: (Default)
The information that has filtered through to layman's websites about IBD:

About.com: Smoking, nicotine and IBD. Smokers with Crohn's Disease have worse disease outcomes, but Ulcerative Colitis is a disease of non-smokers and ex-smokers. Needless to say, smoking is still considered to have far worse outcomes than UC, so returning to smoking is not recommended.

Transdermal nicotine for mildly to moderative ulcerative colitis. A rondomised, double-blind, placebo controlled trial. (64 subjects. Found it was successful)



Preliminary Observations of Oral Nicotine Therapy for IBD.


Smoking and Nicotine in IBD - Good or Bad For Cytokines? Review Article.


And here's an intersting one: the authors of this study suggest the benefits or harms of nicotine on the course of IBD depends not on which disease you have, but where the inflammation is located. I mostly have colitis, inflammation of the colon, although the overall disease is Crohn's Disease (which can mean inflammation anywhere in the gastrointestinal tract), while ulcerative colitis only occurs in the colon (d'uh). So this would make a lot of sense.
Effect of Smoking on Inflammatory Bowel Disease: Is It Disease or Organ Specific?
splodgenoodles: (Default)
The information that has filtered through to layman's websites about IBD:

About.com: Smoking, nicotine and IBD. Smokers with Crohn's Disease have worse disease outcomes, but Ulcerative Colitis is a disease of non-smokers and ex-smokers. Needless to say, smoking is still considered to have far worse outcomes than UC, so returning to smoking is not recommended.

Transdermal nicotine for mildly to moderative ulcerative colitis. A rondomised, double-blind, placebo controlled trial. (64 subjects. Found it was successful)



Preliminary Observations of Oral Nicotine Therapy for IBD.


Smoking and Nicotine in IBD - Good or Bad For Cytokines? Review Article.


And here's an intersting one: the authors of this study suggest the benefits or harms of nicotine on the course of IBD depends not on which disease you have, but where the inflammation is located. I mostly have colitis, inflammation of the colon, although the overall disease is Crohn's Disease (which can mean inflammation anywhere in the gastrointestinal tract), while ulcerative colitis only occurs in the colon (d'uh). So this would make a lot of sense.
Effect of Smoking on Inflammatory Bowel Disease: Is It Disease or Organ Specific?
splodgenoodles: (Default)
1. The story so far:

I have Chronic Fatigue Syndrome; there are no drugs proven and approved for its treatment. I have Crohn's Disease, there are several options for Crohn's Disease management.

I have been crippled and seriously disabled by Chronic Fatigue Syndrome, while my Crohn's Disease has (mostly) been a hindrance only.

For many years I have been on prednisolone for Crohn's Disease; it has many bad side effects so I(and the relevant medical folk) have been trying very hard to find a better treatment.

A few months ago now, I went on infliximab, a drug available for the treatment of Crohn's Disease.

Since then, my fatigue has lessened considerably. It's been great, I've felt like *me* again.

My bowel symptoms remained much the same. But, as it happens, my fatigue was so markedly improved that the Crohn's people (the gastro unit of a large public hospital) were very happy that I should stay on infliximab. While I appear to have both Chronic Fatigue Syndrome and Crohn's Disease, fatigue is *also* a symptom of Crohn's Disease so the reduction in my level of fatigue meant I was, in their eyes, eligible for ongoing infliximab on those grounds alone. (After all, the measurements of fatigue don't actually distinguish between CFS-type fatigue and Crohn's type fatigue).

The next step was to come off the prednisolone.

This has not worked out. The prednisolone withdrawal has led to a significant and serious deterioration in bowel symptoms, beyond anything that can be managed without a big increase in prednisolone. And I might add, symptoms at a level that are very hard to live with.

It still seems to be very good for fatigue. In spite of the increase in Crohn's symptoms, my fatigue levels were still much reduced.

But given the Crohn's still cannot be managed without the large doses of prednisolone, infliximab is now considered a treatment failure.

I'm not eligible anymore.

~~~

2. I am not surprised.

I can't be surprised: inlfliximab doesn't work for everyone *and* it tends to wear off over time anyway. A few years ago I quite quickly developed resistance to its sister drug and stopped that too.

But I am disappointed. I just wish I'd had more time.

~~~

3. It's not necessarily an injustice. Not directly, anyway. Actually no, it is an injustice, a big one, but the cause lies elsewhere.

I do not think it's necessarily wrong that I'm not eligible: both drugs are powerful immune suppressants, as is the methotrexate that I also take.

I am bitter that research into CFS is so...non existent... that we don't know whether this is just one individual's experience or something that can help others. In fact, no one even knows that this treatment may have an effect on CFS because the details of my CFS are not relevant in the adminstration of the drug because I've been getting it for Crohn's because it's Crohn's that makes me eligible.

When fatigue comes up, even though it appears to operate independently of my Crohn's Disease(and always has, which is why successive gastroenterologists and CFS people have decided I have both conditions), and even though people with Crohn's-related fatigue describe different fatigue symptoms to CFS-fatigue symptoms, it is conflated with Crohn's Disease. And therefore lost to research.

~~~

4. Meanwhile, Splozza pondered what lay before her.

All of this explanation, which I hope is useful, is by way of explaining the direction our lives will be taking in the near future.

As I am no longer eligible for infliximab further improvement in my fatigue level seems unlikely. I may waft back to the level I was at before.

I'm not entirely sure, because some years ago now I was on a similar drug which had a similar (and entirely unexpected) effect on my CFS. I don't recall that I crashed when I came off it, but improvement certainly slowed down/stopped, so who knows? I have observed that I seem to waft back down before each infusion of infliximab so I confess I'm not wildly optimistic.

~~~

5. The hospital people are keen to recruit me into another clinical trial. Well, they basically see it as the most logical next step.

As I understand it, the deal with this trial is much the same as with the last trial I was in: for the first three months you get trial drug or placebo. Your other medications must remain stable. If they don't (because you get too sick) you are off the trial. After the three months, if you got the placebo, you get the drug for as long as you need/want it. If you got the active drug, I think you then get a spell off it, and then back on. Either way, once you're one they'll continue to give you the drug indefinitely and monitor you for both research purposes and for your own safety (as it is, after all, still only a research drug).


They say that places are filling up fast as it's proving a very popular trial. In other words, I guess, the various research centres around the world are clearly seeing good things happen to their patients (who are all folk like me who've run out of other options), so they are, not surprisingly, quite keen to get difficult patients enrolled.

This, of course, means that they are worried I'll miss out if we don't act fast. Me too.

~~~

6. But the last clinical trial was not a roaring success.

The uncertainty takes a huge toll. On you and on your loved ones.

And in many ways, I think it was harder for 10B than me. I've worked in allied health research so I'm not unfamiliar with how these things go, and as a subject in the last trial, I felt like I was very much a contributor to the the whole process, which I guess ameliorates the horrible sense of uncertainty somewhat. For a loved one, I think it's not so easy. I think it might be like watching your beloved disappear into a labyrinth.

For me it ended when I was admitted via Emergency in the middle of the night, needing large amounts of intravaneous fluids and prednisolone and the need for prednisolone made me ineligible to stay in the trial. That was over Easter last year.

For 10B it ended with a tearful phone call while he was on a much needed holiday, calling him home to be my carer again.

~~~

7. Choices?

A. Say no. Stay on ever increasing doses of prednisolone. Probably end up needing surgery which will mean a level of daily personal care that I might not be able to manage.

B. Other clinical trials? Maybe something else is in the pipeline? Could I enlist in something else in six months time and just continue with prednisolone for now? Give us more of a breather before we go through this hellride again? (But prednisolone is a hellride anyway...). Well. I've asked before and this is the only one they've mentioned. There probably are others in the pipeline, but how long before another comes along that might be appropriate (and the longer I am on higher and higher doses of prednisolone, the less likely I would be eligible, and if I were to have surgery I'd never be eligible again anyway...and as time goes by it just gets more and more likely that I would be ineligible for some other health reason.)

C. Off label drugs? Thalidomide, anyone? Expensive and sometimes very dodgy choices. Experimenting without the monitoring and care of a research team...? Or even if it's done with the help of this research team, they are still only ever case studies, n=1, inherently more tricky than something that's at the level of a clinical trial. Last resort, absolutely.
splodgenoodles: (Default)
1. The story so far:

I have Chronic Fatigue Syndrome; there are no drugs proven and approved for its treatment. I have Crohn's Disease, there are several options for Crohn's Disease management.

I have been crippled and seriously disabled by Chronic Fatigue Syndrome, while my Crohn's Disease has (mostly) been a hindrance only.

For many years I have been on prednisolone for Crohn's Disease; it has many bad side effects so I(and the relevant medical folk) have been trying very hard to find a better treatment.

A few months ago now, I went on infliximab, a drug available for the treatment of Crohn's Disease.

Since then, my fatigue has lessened considerably. It's been great, I've felt like *me* again.

My bowel symptoms remained much the same. But, as it happens, my fatigue was so markedly improved that the Crohn's people (the gastro unit of a large public hospital) were very happy that I should stay on infliximab. While I appear to have both Chronic Fatigue Syndrome and Crohn's Disease, fatigue is *also* a symptom of Crohn's Disease so the reduction in my level of fatigue meant I was, in their eyes, eligible for ongoing infliximab on those grounds alone. (After all, the measurements of fatigue don't actually distinguish between CFS-type fatigue and Crohn's type fatigue).

The next step was to come off the prednisolone.

This has not worked out. The prednisolone withdrawal has led to a significant and serious deterioration in bowel symptoms, beyond anything that can be managed without a big increase in prednisolone. And I might add, symptoms at a level that are very hard to live with.

It still seems to be very good for fatigue. In spite of the increase in Crohn's symptoms, my fatigue levels were still much reduced.

But given the Crohn's still cannot be managed without the large doses of prednisolone, infliximab is now considered a treatment failure.

I'm not eligible anymore.

~~~

2. I am not surprised.

I can't be surprised: inlfliximab doesn't work for everyone *and* it tends to wear off over time anyway. A few years ago I quite quickly developed resistance to its sister drug and stopped that too.

But I am disappointed. I just wish I'd had more time.

~~~

3. It's not necessarily an injustice. Not directly, anyway. Actually no, it is an injustice, a big one, but the cause lies elsewhere.

I do not think it's necessarily wrong that I'm not eligible: both drugs are powerful immune suppressants, as is the methotrexate that I also take.

I am bitter that research into CFS is so...non existent... that we don't know whether this is just one individual's experience or something that can help others. In fact, no one even knows that this treatment may have an effect on CFS because the details of my CFS are not relevant in the adminstration of the drug because I've been getting it for Crohn's because it's Crohn's that makes me eligible.

When fatigue comes up, even though it appears to operate independently of my Crohn's Disease(and always has, which is why successive gastroenterologists and CFS people have decided I have both conditions), and even though people with Crohn's-related fatigue describe different fatigue symptoms to CFS-fatigue symptoms, it is conflated with Crohn's Disease. And therefore lost to research.

~~~

4. Meanwhile, Splozza pondered what lay before her.

All of this explanation, which I hope is useful, is by way of explaining the direction our lives will be taking in the near future.

As I am no longer eligible for infliximab further improvement in my fatigue level seems unlikely. I may waft back to the level I was at before.

I'm not entirely sure, because some years ago now I was on a similar drug which had a similar (and entirely unexpected) effect on my CFS. I don't recall that I crashed when I came off it, but improvement certainly slowed down/stopped, so who knows? I have observed that I seem to waft back down before each infusion of infliximab so I confess I'm not wildly optimistic.

~~~

5. The hospital people are keen to recruit me into another clinical trial. Well, they basically see it as the most logical next step.

As I understand it, the deal with this trial is much the same as with the last trial I was in: for the first three months you get trial drug or placebo. Your other medications must remain stable. If they don't (because you get too sick) you are off the trial. After the three months, if you got the placebo, you get the drug for as long as you need/want it. If you got the active drug, I think you then get a spell off it, and then back on. Either way, once you're one they'll continue to give you the drug indefinitely and monitor you for both research purposes and for your own safety (as it is, after all, still only a research drug).


They say that places are filling up fast as it's proving a very popular trial. In other words, I guess, the various research centres around the world are clearly seeing good things happen to their patients (who are all folk like me who've run out of other options), so they are, not surprisingly, quite keen to get difficult patients enrolled.

This, of course, means that they are worried I'll miss out if we don't act fast. Me too.

~~~

6. But the last clinical trial was not a roaring success.

The uncertainty takes a huge toll. On you and on your loved ones.

And in many ways, I think it was harder for 10B than me. I've worked in allied health research so I'm not unfamiliar with how these things go, and as a subject in the last trial, I felt like I was very much a contributor to the the whole process, which I guess ameliorates the horrible sense of uncertainty somewhat. For a loved one, I think it's not so easy. I think it might be like watching your beloved disappear into a labyrinth.

For me it ended when I was admitted via Emergency in the middle of the night, needing large amounts of intravaneous fluids and prednisolone and the need for prednisolone made me ineligible to stay in the trial. That was over Easter last year.

For 10B it ended with a tearful phone call while he was on a much needed holiday, calling him home to be my carer again.

~~~

7. Choices?

A. Say no. Stay on ever increasing doses of prednisolone. Probably end up needing surgery which will mean a level of daily personal care that I might not be able to manage.

B. Other clinical trials? Maybe something else is in the pipeline? Could I enlist in something else in six months time and just continue with prednisolone for now? Give us more of a breather before we go through this hellride again? (But prednisolone is a hellride anyway...). Well. I've asked before and this is the only one they've mentioned. There probably are others in the pipeline, but how long before another comes along that might be appropriate (and the longer I am on higher and higher doses of prednisolone, the less likely I would be eligible, and if I were to have surgery I'd never be eligible again anyway...and as time goes by it just gets more and more likely that I would be ineligible for some other health reason.)

C. Off label drugs? Thalidomide, anyone? Expensive and sometimes very dodgy choices. Experimenting without the monitoring and care of a research team...? Or even if it's done with the help of this research team, they are still only ever case studies, n=1, inherently more tricky than something that's at the level of a clinical trial. Last resort, absolutely.
splodgenoodles: (Default)
From the Phoenix Rising website comes a report on some really good research into a way of diagnosing CFS.

Please go have a read. Even if you don't have an interest in CFS research, it will help you understand more about the experience of post-exertional malaise, possibly the most crippling and misunderstood symptom of all.


Three excerpts:
Staci Stevens, the founding Executive Director of the Pacific Fatigue Lab explained. “Many researchers look at ME/CFS patients when they’re at rest- at baseline. But as any ME/CFS patient knows, the real problems occur when their systems are under stress due to too much activity. We’re taking a close look the physiology of CFS patients as they undertake the most stressful activity of all – exercise.”

Many ME/CFS patients can, after all, get through a single ‘workout’ or a single day or single afternoon at work okay only to ‘crash’ afterwords. Until now, though, no one’s taken a close look at the ME/CFS patient’s ability to produce energy when they’re in a crash – an odd oversight in a disease whose symptoms are so tied to activity.

According to modern medical science this shouldn’t occur. For decades researchers have shown that human beings, under virtually all conditions and in a variety of disease states, can take an exercise test to exhaustion, recover and return the next day and score the same the next day. It doesn’t matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health - has an amazing ability to quickly return to a baseline level of energy. That is until now.
splodgenoodles: (Default)
From the Phoenix Rising website comes a report on some really good research into a way of diagnosing CFS.

Please go have a read. Even if you don't have an interest in CFS research, it will help you understand more about the experience of post-exertional malaise, possibly the most crippling and misunderstood symptom of all.


Three excerpts:
Staci Stevens, the founding Executive Director of the Pacific Fatigue Lab explained. “Many researchers look at ME/CFS patients when they’re at rest- at baseline. But as any ME/CFS patient knows, the real problems occur when their systems are under stress due to too much activity. We’re taking a close look the physiology of CFS patients as they undertake the most stressful activity of all – exercise.”

Many ME/CFS patients can, after all, get through a single ‘workout’ or a single day or single afternoon at work okay only to ‘crash’ afterwords. Until now, though, no one’s taken a close look at the ME/CFS patient’s ability to produce energy when they’re in a crash – an odd oversight in a disease whose symptoms are so tied to activity.

According to modern medical science this shouldn’t occur. For decades researchers have shown that human beings, under virtually all conditions and in a variety of disease states, can take an exercise test to exhaustion, recover and return the next day and score the same the next day. It doesn’t matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health - has an amazing ability to quickly return to a baseline level of energy. That is until now.
splodgenoodles: (Default)
An hour or so ago I wished I was good at crying, unfortunately I'm not.

Instead I was twitchy and wanting to throw a tantrum. It took me a while to twig, but of course I'm off to see the wizard tomorrow (actually, the Inflammatory Bowel Disease research unit). Like it or lump it I will be upset if they send me away with nothing. I want to get well. I want my life to change. And it's unlikely to happen without medical help.

If they can't help me I am expecting them to be nice about it.

A barber's shop quartet as I leave:

Geez bummer, sucks to be yooouuuu
Geez bummer, sucks to be yoouuu


is kind of what I'm expecting.

This has now become an earworm and I've now put in a load of laundry, stacked the dishwasher and started ploughing through my papers with this going through my head.

Usually when I'm being productive round the house it's the "Life. Be In It." theme from the 1970s and 80s (it was a public health campaign promoting things like kite flying and bike riding and watching less telly, the song was great), or the Indiana Jones theme for when I'm really flying. But I'm afraid this is the best I can do right now.


~~~

Of course it's cause for celebration that I _mostly_ find people are nice about it all these days. Mind you, 10B will have my back - people are rarely mean when you've got a supportive husband next to you. (They can still get things wrong, but they watch their words more carefully and are disinclined to try and 'pull rank' on you).

~~~

Further lines for the above ditty would be most acceptable.
splodgenoodles: (Default)
An hour or so ago I wished I was good at crying, unfortunately I'm not.

Instead I was twitchy and wanting to throw a tantrum. It took me a while to twig, but of course I'm off to see the wizard tomorrow (actually, the Inflammatory Bowel Disease research unit). Like it or lump it I will be upset if they send me away with nothing. I want to get well. I want my life to change. And it's unlikely to happen without medical help.

If they can't help me I am expecting them to be nice about it.

A barber's shop quartet as I leave:

Geez bummer, sucks to be yooouuuu
Geez bummer, sucks to be yoouuu


is kind of what I'm expecting.

This has now become an earworm and I've now put in a load of laundry, stacked the dishwasher and started ploughing through my papers with this going through my head.

Usually when I'm being productive round the house it's the "Life. Be In It." theme from the 1970s and 80s (it was a public health campaign promoting things like kite flying and bike riding and watching less telly, the song was great), or the Indiana Jones theme for when I'm really flying. But I'm afraid this is the best I can do right now.


~~~

Of course it's cause for celebration that I _mostly_ find people are nice about it all these days. Mind you, 10B will have my back - people are rarely mean when you've got a supportive husband next to you. (They can still get things wrong, but they watch their words more carefully and are disinclined to try and 'pull rank' on you).

~~~

Further lines for the above ditty would be most acceptable.
splodgenoodles: (Default)
I'm after some academic articles. Can someone please help me with these two?

1. Ann Med. 2001 Nov;33(8):516-25.
"Thalidomide treatment for refractory Crohn's disease: a review of the history, pharmacological mechanisms and clinical literature."
Ginsburg PM, Dassopoulos T, Ehrenpreis ED.

2. Gastroenterology. 1999 Dec;117(6):1278-87.
"An open-label pilot study of low-dose thalidomide in chronically active, steroid-dependent Crohn's disease."
Vasiliauskas EA, Kam LY, Abreu-Martin MT, Hassard PV, Papadakis KA, Yang H, Zeldis JB, Targan SR.


There may be more, but I'm buggered.
splodgenoodles: (Default)
I'm after some academic articles. Can someone please help me with these two?

1. Ann Med. 2001 Nov;33(8):516-25.
"Thalidomide treatment for refractory Crohn's disease: a review of the history, pharmacological mechanisms and clinical literature."
Ginsburg PM, Dassopoulos T, Ehrenpreis ED.

2. Gastroenterology. 1999 Dec;117(6):1278-87.
"An open-label pilot study of low-dose thalidomide in chronically active, steroid-dependent Crohn's disease."
Vasiliauskas EA, Kam LY, Abreu-Martin MT, Hassard PV, Papadakis KA, Yang H, Zeldis JB, Targan SR.


There may be more, but I'm buggered.

Stuff

Aug. 9th, 2008 06:36 pm
splodgenoodles: (Lacey's)
10 year anniversay of CFS coming up. Emotionally kind of heavy.

And now a highly respected endocrinologist disputes that diagnosis.

I feel her main symptoms are directly related to her prednisolone use and that she essentially has iatrogenic Cushing's syndrome.

If he's right, the implications are enormous. If he is not the implications are also enormous.

And hope - I'm scared of hope. Hope becomes dangerous when it fails you too often. I don't want to get hurt anymore.

And I'm scared of doing anything rash. Which I could do. When you see a potential way out of your situation, you can easily believe just because you want it so much.

I got the letter from him last night and I can't quite explain the emotional impact of seeing all this written down. Labels are powerful things. And this raised so many questions. And could change so much.

~~~

Last night Mum-in-Law came by and made a point of sitting me down and telling me not to protect her. That she's always kept her head in the sand and that she needs to stop and so I need to stop protecting her from the reality of my situation regarding the Crohn's Disease and what might lie ahead. She pointed out she's family, and she will cope and I'm not to worry about how she feels, she'll manage and she'll deal with her own issues.

God she's a trooper. As it happens, given I know how squeamish she is, I've been amazed at how well she *has* coped.

Family!

~~~

But now I have to fight. I have to push hard to get a chance to explore all options, to not simply go down the same road that others go. Because I don't want to go there, and I *am* willing to fight to avoid it. I *am* willing to try other options first and I need to find the people who will support me and help me in that. I've just got to find them, prove that I'm willing and get them on side, whether that's because they feel sorry for me, want to rescue me or are simply wanting to follow up on some research possibility that they like. Doesn't matter why. Shake them by the lapels and say 'take my body it's yours, do what you want'.

OMFG so much work to do. Soooo much.

Stuff

Aug. 9th, 2008 06:36 pm
splodgenoodles: (Lacey's)
10 year anniversay of CFS coming up. Emotionally kind of heavy.

And now a highly respected endocrinologist disputes that diagnosis.

I feel her main symptoms are directly related to her prednisolone use and that she essentially has iatrogenic Cushing's syndrome.

If he's right, the implications are enormous. If he is not the implications are also enormous.

And hope - I'm scared of hope. Hope becomes dangerous when it fails you too often. I don't want to get hurt anymore.

And I'm scared of doing anything rash. Which I could do. When you see a potential way out of your situation, you can easily believe just because you want it so much.

I got the letter from him last night and I can't quite explain the emotional impact of seeing all this written down. Labels are powerful things. And this raised so many questions. And could change so much.

~~~

Last night Mum-in-Law came by and made a point of sitting me down and telling me not to protect her. That she's always kept her head in the sand and that she needs to stop and so I need to stop protecting her from the reality of my situation regarding the Crohn's Disease and what might lie ahead. She pointed out she's family, and she will cope and I'm not to worry about how she feels, she'll manage and she'll deal with her own issues.

God she's a trooper. As it happens, given I know how squeamish she is, I've been amazed at how well she *has* coped.

Family!

~~~

But now I have to fight. I have to push hard to get a chance to explore all options, to not simply go down the same road that others go. Because I don't want to go there, and I *am* willing to fight to avoid it. I *am* willing to try other options first and I need to find the people who will support me and help me in that. I've just got to find them, prove that I'm willing and get them on side, whether that's because they feel sorry for me, want to rescue me or are simply wanting to follow up on some research possibility that they like. Doesn't matter why. Shake them by the lapels and say 'take my body it's yours, do what you want'.

OMFG so much work to do. Soooo much.

Thursday.

Apr. 10th, 2008 02:55 pm
splodgenoodles: (Default)
We have too many pumpkins!

I didn't even plant any, they just appeared.

~~~~

I am still reading that book on the Etruscans. Written in the 70s, so I don't know if it's been completely superceded by now, but it's what I found on the shelf when I was hungry for the learning last time I was in the library.

Point being, the Etruscans had an amazing amount of knowledge and skill in agricultural technology: they transformed the landscape with irrigation and drainage, enabling intensive and varied food production and took that part of Italy out of the Bronze Age. Yet they also believed in fate and predestination to a degree that astounded even the other fairly fatalistic cultures around them. I suppose it's not that contradictory really. Predestined to advance and flourish and change and transform - or not. Ultimately other forces decide how far you can go with that.

And they read thunderstorms. And livers. Big on the livers. I wonder why people don't read livers now? After all these were wise people - scientists, even. And afterwards you could have a nice lunch.

~~~~

I did my customary glance over the internet for ME/CFS research the other day - I do it every so often in the vague hope that someone has found a cure. I can't say I hold my breath when I do, but I'd feel like a right berk if everyone else had found and taken the Magic Pill and I was still slouching round at home when I could be out jogging and building rocket ships and all those other things that need doing, so I do the right thing and have a bit of a look before going back to watching the paint peel and wondering about livers. Needless to say, no one's come up with anything yet although some of the anti-viral research looks promising and there's a new major split in the research community, including bonus arguments over a new latest definition of CFS, shoot me now.

Rather than detail this, I'll just refer anyone curious to Phoenix Rising, Cort Johnson's excellent newsletter, scroll down for the article.

The other thing I found was Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses
Using a National Birth Cohort Study.


Journal: Psychosom Med. 2008 Mar 31 [Epub ahead of print]

Authors: Harvey SB, Wadsworth M, Wessely S, Hotopf M.
Affiliations: Institute of Psychiatry (S.B.H., S.W., M.H.), King's
College London, London, UK; Medical Research Council's National
Survey of Health and Development (M.W.), Department of Epidemiology
and Public Health, Royal Free and UCL Medical School, London, UK.

PMID: 18378866


Objective: To review the etiology of chronic fatigue syndrome (CFS)
and test hypotheses relating to immune system dysfunction, physical
deconditioning, exercise avoidance, and childhood illness
experiences, using a large prospective birth cohort.

Methods, results: )
Conclusions: Individuals who exercise frequently are more likely to
report a diagnosis of CFS in later life. This may be due to the
direct effects of this behavior or associated personality factors.
Continuing to be active despite increasing fatigue may be a crucial
step in the development of CFS.


Given the authorship of this article, maybe a few diehards are finally coming to their senses. They will cling on to the importance of pysch and personality issues, of course - that's their baby, that's what they've devoted their lives to. And I guess they might be right, up to a point - I don't think we know enough to know yet. But the 'evidence based' overturning of the excercise phobia myth is a good start.

~~~~

Thursday.

Apr. 10th, 2008 02:55 pm
splodgenoodles: (Default)
We have too many pumpkins!

I didn't even plant any, they just appeared.

~~~~

I am still reading that book on the Etruscans. Written in the 70s, so I don't know if it's been completely superceded by now, but it's what I found on the shelf when I was hungry for the learning last time I was in the library.

Point being, the Etruscans had an amazing amount of knowledge and skill in agricultural technology: they transformed the landscape with irrigation and drainage, enabling intensive and varied food production and took that part of Italy out of the Bronze Age. Yet they also believed in fate and predestination to a degree that astounded even the other fairly fatalistic cultures around them. I suppose it's not that contradictory really. Predestined to advance and flourish and change and transform - or not. Ultimately other forces decide how far you can go with that.

And they read thunderstorms. And livers. Big on the livers. I wonder why people don't read livers now? After all these were wise people - scientists, even. And afterwards you could have a nice lunch.

~~~~

I did my customary glance over the internet for ME/CFS research the other day - I do it every so often in the vague hope that someone has found a cure. I can't say I hold my breath when I do, but I'd feel like a right berk if everyone else had found and taken the Magic Pill and I was still slouching round at home when I could be out jogging and building rocket ships and all those other things that need doing, so I do the right thing and have a bit of a look before going back to watching the paint peel and wondering about livers. Needless to say, no one's come up with anything yet although some of the anti-viral research looks promising and there's a new major split in the research community, including bonus arguments over a new latest definition of CFS, shoot me now.

Rather than detail this, I'll just refer anyone curious to Phoenix Rising, Cort Johnson's excellent newsletter, scroll down for the article.

The other thing I found was Etiology of Chronic Fatigue Syndrome: Testing Popular Hypotheses
Using a National Birth Cohort Study.


Journal: Psychosom Med. 2008 Mar 31 [Epub ahead of print]

Authors: Harvey SB, Wadsworth M, Wessely S, Hotopf M.
Affiliations: Institute of Psychiatry (S.B.H., S.W., M.H.), King's
College London, London, UK; Medical Research Council's National
Survey of Health and Development (M.W.), Department of Epidemiology
and Public Health, Royal Free and UCL Medical School, London, UK.

PMID: 18378866


Objective: To review the etiology of chronic fatigue syndrome (CFS)
and test hypotheses relating to immune system dysfunction, physical
deconditioning, exercise avoidance, and childhood illness
experiences, using a large prospective birth cohort.

Methods, results: )
Conclusions: Individuals who exercise frequently are more likely to
report a diagnosis of CFS in later life. This may be due to the
direct effects of this behavior or associated personality factors.
Continuing to be active despite increasing fatigue may be a crucial
step in the development of CFS.


Given the authorship of this article, maybe a few diehards are finally coming to their senses. They will cling on to the importance of pysch and personality issues, of course - that's their baby, that's what they've devoted their lives to. And I guess they might be right, up to a point - I don't think we know enough to know yet. But the 'evidence based' overturning of the excercise phobia myth is a good start.

~~~~
splodgenoodles: (Default)
Here is an interview with a chap from the Black Dog Institute. It goes for just under seven minutes.

He feels this latest bit of research is flawed.

The flaw: the research studies that find no difference to placebo are randomised control trials and for ethical reasons, randomised control trials are more inclined to rule people out than in: in other words, no one is included if they are suicidal, if they ill enough to be an inpatient, if they have anxiety, other personality or psych. issues. And people are paid for their participation. So they aren't representative of people suffering depression. They represent only a portion of people suffering fairly mild depression with zero complications.

He likens it to testing a drug for pneumonia on people suffering from a cold.

~~~

He also suggests that it's a rehash of a similar article published by the same researcher a couple of years ago, which got headlines back then too. This is mentioned about half way through the interview as a side issue, but I take it to mean he thinks the guy is on a bit of crusade.

Nice to know I'm not the only person that wondered about that: bells went off for me as soon as I saw references to FOI legislation. Not because there's anything wrong with using that, in fact that's precisely why it's there, but because I feel the use of FOI has been presented as though that supports the veracity of his findings. It does not prove anything one way or the other.

~~~

I guess one of the downsides of the normalisation of depression (ie- it's a nasty disease that can happen to anyone and can be treated and recovered from) is that everyone now thinks they know what it is. This simultaneously relieves people of stigma but creates new problems when a presumption is made of understanding where understanding has not actually occurred.

~~~

Cripes, I do declare I've just had an attack of clear thinking, albeit somewhat diluted by verbal dysentery. I've spent the day sprawled with my feet up - I think it's paying off.

Medical blahblahblah. )
splodgenoodles: (Default)
Here is an interview with a chap from the Black Dog Institute. It goes for just under seven minutes.

He feels this latest bit of research is flawed.

The flaw: the research studies that find no difference to placebo are randomised control trials and for ethical reasons, randomised control trials are more inclined to rule people out than in: in other words, no one is included if they are suicidal, if they ill enough to be an inpatient, if they have anxiety, other personality or psych. issues. And people are paid for their participation. So they aren't representative of people suffering depression. They represent only a portion of people suffering fairly mild depression with zero complications.

He likens it to testing a drug for pneumonia on people suffering from a cold.

~~~

He also suggests that it's a rehash of a similar article published by the same researcher a couple of years ago, which got headlines back then too. This is mentioned about half way through the interview as a side issue, but I take it to mean he thinks the guy is on a bit of crusade.

Nice to know I'm not the only person that wondered about that: bells went off for me as soon as I saw references to FOI legislation. Not because there's anything wrong with using that, in fact that's precisely why it's there, but because I feel the use of FOI has been presented as though that supports the veracity of his findings. It does not prove anything one way or the other.

~~~

I guess one of the downsides of the normalisation of depression (ie- it's a nasty disease that can happen to anyone and can be treated and recovered from) is that everyone now thinks they know what it is. This simultaneously relieves people of stigma but creates new problems when a presumption is made of understanding where understanding has not actually occurred.

~~~

Cripes, I do declare I've just had an attack of clear thinking, albeit somewhat diluted by verbal dysentery. I've spent the day sprawled with my feet up - I think it's paying off.

Medical blahblahblah. )
splodgenoodles: (Default)
Is something amiss with PubMed or has Dave decided that if I learn any more my uterus will shrivel (and that that would be a bad thing)?

The timing couldn't be worse. A student friend discontinues his course this week so I will no longer have instant access to Melbourne Uni's online journal collection. Just as I was getting used to it, too. I was planning a final, frenzied swoop, but I guess it is not to be.

~~~~

I had a very good chat with my counsellor today about how I'm improving physically but am lagging behind emotionally. It all boils down to just how much risk-taking and uncertainty I can realistically handle in one week.

It's very hard to become a shut-in and once you have, it's very hard to un-become one. I had to become one in order to survive the experience.

I can't always explain or predict why certain situations inspire more anxiety than others. They just do.

There was more to it than that but it's nearly bedtime.

~~~~

InsideCat is doing well today. We are reducing the thyroid medication and already she seems more like her old self.

~~~~

I really do feel my life is lacking something at the moment.

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