Help me with my dissertation research

[adreno]

The role of acceptance has been shown to have important impacts on subjective well-being with CFS. This can involve stopping searching for a definite solution to physical complaints, devoting more time to positive everyday activities, and re-evaluating personal goals, values and priorities.

This is an often used argument, that acceptance is somehow fruitful. And I do agree that it is important to accept things that you cannot change. However, who says you can't find solutions to (at least some of) your physical health complaints? I must say that I have made vast improvements in my symptoms, through researching the mechanisms behind this illness. Of course, it is impossible to say if I would have improved without intervention, anyway. But I do think it is a meaningful activity to search for answers in relation to your physical health, perhaps more so than knitting or pastel painting. In any case, I believe it is a favourite interest of most people on this board to research and discuss these issues.

 

[chipmunk1]

This is an often used argument, that acceptance is somehow fruitful. And I do agree that it is important to accept things that you cannot change. However, who says you can't find solutions to (at least some of) your physical health complaints? I must say that I have made vast improvements in my symptoms, through researching the mechanisms behind this illness. Of course, it is impossible to say if I would have improved without intervention, anyway. But I do think it is a meaningful activity to search for answers in relation to your physical health, perhaps more so than knitting or pastel painting. In any case, I believe it is a favourite interest of most people on this board to research and discuss these issues.

agreed.acceptance can have negative consequences sometimes. it's passive and does not solve problems, it teaches you to ignore them or don't care about them. not always a good approach. how does acceptance work when you can no longer take care of yourself and have no one taking care of you?

just accept the situation because if you convince yourself that nothing can be done makes it so much better? some are fighting to just survive, accepting the situation and doing nothing or painting would not be a good strategy in such cases.

 

[Snow Leopard]

The problem with 'one off' interviews is that ME being a chronic illness, that is to say long term, the experience and opinions of the ill person change over time.

This is an excellent point and definitely something to consider deeply.

This has all had to stop. I am lucky now if I can do an hour or two a week of the lightest kind of work. I make no mention of the impact the illness has had on my wage-earning capacity as a craftsman.

Yes, I think many of us have lost our art or craft (music in my case) as a result of this illness.

You've probably realised by now that PWME want one thing and one thing only: it is not to come to terms with their illness but to recover from it - to get it out of their lives, preferably forever, and to be able to live again. It's not unreasonable, I think, to suggest that studies of the kind you are proposing ultimately serve not to help PWME but to prolong their agony because they make research into ME/CFS more diffuse when clarity, focus and increasingly well-aimed biomedical research are what is needed to get to the bottom of this awful illness and give its sufferers the treatment and the respite they have so long been denied.

The question is, what role does telling our story play in gaining attention to our needs and thus gaining awareness of the need for more biomedical research?

 

[alex3619]

Only about 50% of patients suffer from depression, the question is indeed why, and these are the questions that I ask myself- do those people have more financial stress?

I wonder if this is accurate though. As ME symptoms often mirror depressive symptoms there is most probably a tendency for patient reporting instruments to improperly indicate depression.

 

[Snow Leopard]

I wonder if this is accurate though. As ME symptoms often mirror depressive symptoms there is most probably a tendency for patient reporting instruments to improperly indicate depression.

That figure is more or less from Lenny Jason's Chicago community based study (54% current diagnoses, inc anxiety, phobias etc), which included proper screening. It is a reasonable indicator of the prevalence of depression, for the Fukuda/1994 CDC criteria.

 

[andre79]

Well, since it was discovered a few decades ago that stress could produce some harm in our bodies, doctors became lazy to investigate and now every single disease is stress, and to make it worse, since stress is the cause of our illness is our fault to be sick because we were not able to handle it right. Ajá. Sigh.

By the way, people that live in South America have to handle greater quotas of stress than the "white people with overachiever personalities that live in western countries". Despite my avatar photo It's not like we live in jungles, you know? Just saying.

 

[IreneF]

If you are interested in "stress-related" illness, you might interview refugees or genocide survivors. Do they have a high rate of ME/CFS? Or interview people who live in highly polluted regions if you are interested in unnamed toxins.

Personally, I'm interested in improving my situation. My hobbies have gone by the wayside as I've gotten sicker and sicker. I spend most of my time reading.

BTW, I've been diagnosed with major depressive disorder, too. It went away when I finally got an effective antidepressant. It's not much like ME/CFS.

There is no reason to think that either of these are caused by the stresses of modern life or mysterious pollutants any more than they are caused by little green men.

 

[WillowJ]

The role of acceptance has been shown to have important impacts on subjective well-being with CFS. This can involve stopping searching for a definite solution to physical complaints, devoting more time to positive everyday activities, and re-evaluating personal goals, values and priorities. This has been shown to lead to less depression and anxiety and more emotional stability.

Depends what is meant by "acceptance". Accepting that for this particular moment in time, I am sick and disabled, and I do not have to try to be or pretend to be something else, was very helpful.

OTOH, I will never stop looking for a decent treatment, and doing so would be very detrimental. I don't think it's fair when there is no approved treatment for a disabling and miserable disease, to expect people to be all passive and content about the situation.

Actively trying to make a difference, I find leads to better wellbeing. Because then at least I feel there is something I can DO, or at least struggle to make a difference at. That kind of struggle is, as STNG would have it, the essence of being human, yes?

ps, What is a dissertation for if it is not part of a PhD degree?

Edit [Jan 5]: sorry for the "pile on"; I'd not read any of page 3 before typing the above

Edit [Jan 13]: also, didn't mean to say it's not ok to have times when stopping looking for treatment, or to use various coping methods described above... just that different patients will cope in different ways, and it's ok when people don't fit the above model, or not fit it at all times. Some others already said this by now, and I didn't bump the thread to say it in a separate post.

 

[WillowJ]

My model of M.E. is a multiple stress model where infections and mental stresses cause persistent symptoms of fatigue and post-exertional malaise, as well as other complaints such as brain fog and poor temperature control. As an M.E. sufferer myself I can appreciate the reality of these symptoms.

The focus of my project is on well-being and how CFS sufferers realise it in their own particular ways

Just curious: why do you need to have a model of ME in order to complete this project? (Or was that just a personal model, maybe in response to a question?) Wouldn't it make more sense to cover multiple models of ME in the introduction? Have you maybe seen footage of some of the recent conferences, such as the Invest in ME one, and the California joint Stanford/ IACFS/ME one?

 

[ukxmrv]

I lost my ability to paint through this disease. Cannot stand very well and for long, cannot lift my hands up and paint with precision. Cannot prepare canvasses.

There is also the problem of brain fog and the cognitive difficulties of the brain symptoms which has robbed me of the ideas and therefore my creativity.

It sounds as if you have a strange ideas of what ME and CFS are and are want to put some square pegs in the round holes to justify your ideas.

 

[Aurator]

The question is, what role does telling our story play in gaining attention to our needs and thus gaining awareness of the need for more biomedical research?

I sometimes think it plays a counter-productive role, to be honest, the chain of thought in many quarters (or at least quarters of greatest influence) apparently going as follows:

A). We can't find evidence of anything significantly physiologically wrong with these patients, and we have taken pains to reassure them that that is the case.
B). Their continued and insistent vocalization of their suffering must therefore have a psychiatric explanation, viz. they are hypochondriacs.
C). Their insistence on the need for biomedical research and their habitual congregation into pressure-groups as a means of enforcing the medical establishment into carrying out such research is merely confirmation of their self-delusion.
D). Those few people in the medical community who have chosen to take a biomedical approach to the illness have themselves been deluded in that they have allowed patient testimony to outweigh the vast body of empirical scientific evidence showing there is little to nothing physiologically wrong with these patients. If these medical practitioners were better acquainted with psychiatry and therefore more sensitised to observable psychiatric phenomena in their patients, the reason for their ongoing failure to find substantive proof of physiological abnormalities in these patients would at once become clear to them.

 

[Iquitos]

" ...that stress-induced illnesses such as CFS..."

That is enough for me to know that I will not participate in your little quiz. To write that phrase tells me you already have the wrong idea about what causes and perpetuates this illness.

Why ignore all the research that proves this illness is physical and then call it a "stress-induced illness"?

For what it's worth, even now after 33 years of suffering, I am not nor have I ever been depressed. I don't suffer from anxiety and never have. My major emotion is anger. Anger that my government has actively opposed acknowledging the reality of the illness and misinformed all the areas of my life that could have made the illness more bearable or even treatable:

Misinformed the medical industry.

Discriminated against researchers looking for the physical causes.

Squandered what little research money given to the illness by awarding it to frauds out to "prove" it's psychological.

Changed the original name of ME to CFS in a very successful attempt to trivialize it and its sufferers, make it seem unimportant.

Misinformed my family and friends so that only a very few who can think independently actually grasp that what I have is a physical illness with some psychological ramifications.

Sacrificed us to predatory psychologists and psychiatrists and to their disability insurance and health insurance puppet masters, many of whom word their "scientific questionnaires" in such a manner as to get the response they want. In other words, not looking for the truth but looking to support an untruth.

And I reserve a little anger for those who would perpetuate these injustices.

"Acceptance" is not going to help me, nor will it help most of us. That's like telling someone who has been framed for a crime they did not commit being told to accept a life sentence to prison.

 

[Valentijn]

I personally think the sociological relationship between ME and depression is an interesting one. Only about 50% of patients suffer from depression, the question is indeed why, and these are the questions that I ask myself- do those people have more financial stress? Do those people have less social support?

I think the more important question regarding ME and depression is what the rates really are. Most (all?) of the BPS research into the matter uses grossly inappropriate questionnaires where physical and cognitive symptoms themselves are considered indicative of mood disorders.

Maybe I'll start a poll here, with the one question which actually matters: Are you depressed? [yes/no]

 

[andre79]

I have all the physical symptoms of depression, and I lack serotonin, I usually need some bitter chocolate to get me moving but I am NOT depressed.

How do I know? The first and principal symptom of depression is LACK OF INTEREST. Depressed people don't feel like doing anything, they just don't care. If you ask a depressed person what they want to do, they would say nothing. If you ask a CFS person what they want to do, they would probably list 100 things, including jogging, studying, travelling, working full time, skying, and many other things. The problem is that we physically can't do it. We want to, but we can't.

In my case, if i were depressed I wouldn't be seeking illnesses and researching treatments to get well. I WANT to get out of this, and then comes the frustration with the doctors and their squares minds, but frustration doesn't depresses me, it kinds of angers me. But even with my lack of serotonin, i still have the inner motivation to keep fighting in the hope of finally finding a treatment that helps me.

 

[IreneF]

There's also the chicken and egg question: what came first, the depression or the ME/CFS? Lying in bed, unable to concentrate, no assurance of recovery, is a recipe for depression. Plus depression occurs with other illnesses, such as heart disease.

 

[taniaaust1]

I was intending to use life history interview techniques to understand how sufferers make sense of their illness. One means that sufferers can do this is through creative hobbies such as painting. How do such activities help them come to term with their illness? The role of acceptance has been shown to have important impacts on subjective well-being with CFS. This can involve stopping searching for a definite solution to physical complaints, devoting more time to positive everyday activities, and re-evaluating personal goals, values and priorities. This has been shown to lead to less depression and anxiety and more emotional stability.

The issue is, often in us esp the more severe patient group, less depression and anxiety and more emotional stability.. does crap all to help our disabling symptoms.

Ive got over 90 different problems with my ME, at times with it havent at all been suffering from anxiety or depression with it but still are extremely disabled. So I dont really understand how those things help us much at all other then may lower suicide risk in general in some who the illness has made depressed (often that depression can be brought n by the very bad treatment of others due to biased towards us, discrimination towards this illness is causing some of us to have to lead shocking lives iwthout getting the support we should have).

Help any anxiety or depression and you still have the group of ME people completely disabled still.

Acceptance of the illness may make happier but still just as disabled people!.

It would also be helpful to know whether there are any other projects being undertaken by Phoenix Rising which members have the opportunity to participate in?

The website does welcome members getting involved more with it and does also welcome articles to be published on it with approval. Thing is most of us all too ill to be participating how we'd like to be eg A couple of us when volunteers will called to do book reviews to later be published on this website, we volunteered but then found we were too ill to do them. So that never ended up happening at the website. (Whole thing made me feel like crap when I had to be realistic and come to terms I wasnt well enough to once again do something I really wanted to be doing!).

We can want to be more creative etc but our illness prevents us often form being so as we are just too sick. (If you can still study with this illness you are truely lucky). I had to give up so many of my crafts and hobbies due to ME as my body could no lnger do them eg I can no longer read music and play at same time, I can no longer do my leather work as I get very sick with the dyes etc (due to the ME coexisting MCS), I can no longer knit as it hurts my hands too much and doing any fine stuff with my hands can cause them to start shaking and leave me afterwards unable to use them etc etc.

Sorry I cant see how the research you are doing is going to benefit us at all as trying to fix things from the angle you are currently focused on isnt help to ME patients. You may be able to get someone to accept illness better but it doesnt at all fix the disablity.

My offer still stands to answer your questions.. I dont think you have much knowledge around severe ME from your current thinking on it and what you think will help. I think you could do with talking to some who are severely ill with it.

 

[taniaaust1]

What we do need is professionals who're willing to challenge these bizarre claims and ideas that only seem to make sense on superficial examination.

but how do those professionals get to the point where they are looking deep enough to see the claims often made about us are bizarre? eg we can all exercise our way back to good health is just one of the bizarre claims or the claim we find bizarre as we know it isnt true.. eg we can be all cured by lowering our stress.

They end up at forums such as this, asking questions. Professionals dont know how deep they do need to look at things until they became aware of the biased which has gone on with this patient group eg leaving the sicker patients out of CFS studies etc (some of those studies have discluded people due to ME symptoms!! so hence studying "chronic fatigue" more then ME/CFS) etc etc

Maybe many of those need to go throu a learning process first, to understand that not all patients under the "CFS" banner are the same as far as the illness goes.

Stress has always been around. One can even make a case for less stress in the 21st C for more people than ever before.

Excellent point. In many ways there is less stress eg we dont have to worry about being eatten by wild beasts!!

There is nothing at all to show this illness is one of just recent times either seeing there is no way currently to test a body and tell if it had ME/CFS. Maybe this illness has ALWAYS been around. So the belief that its an illness of recent times, seems kind of crazy to me.

I found in my family history the other day an ancestor back in the 1800s who at times in her life went years very very ill .. she'd get a bit better but then end up very sick again, she had a severe illness (which I think left her unable to get around) which was quite variable. She was doing better in her aged years then when she should of been at her prime.

So what was her illness? How many illnesses out there an leave people basically bedridden for years but get better but then can reincur at times? I have to wonder if she had ME/CFS.

 

[taniaaust1]

So you might also want to consider where people like me might fit into your scheme of things. Do you think the hour or two I am able to do a week of my craft can help me come to terms with my illness? Or do you think instead perhaps that the speed with which I now reach exhaustion merely serves as a cruel reminder of how much I have lost to this illness and how slender the prospect is of ever being able to resume my former career? The second of these is the only reality for me.

Im like that, trying to get creative and wanting to get creative, in the past has often only served as a cruel reminder to me how sick I are eg say at times I start to get better in some way and start thinking "Oh I should be able to do that again now" (and get a rush of anticipation as Ive convinced myself that maybe I can) .. its a cruel hit when once again I find Im still too unwell to do that thing I'd got my hopes up about.

Cause I try to think positive about things, I often end up thinking too positive.. and over estiminating what I can do with my health level. (this kind of thing.. thinking Im more healthy then I are.. can impact me so greatly it can end up sending me to hospital). I impact my health less by making sure I dont do that even if it means having to dwell on my symptoms more (something which I dont like but it keeps me in reality of the situation).

 

[taniaaust1]

"Acceptance" is not going to help me, nor will it help most of us. That's like telling someone who has been framed for a crime they did not commit being told to accept a life sentence to prison.

Acceptance doesnt get my food groceries when Im on the floor as Im unable to walk!

All acceptance may do is help those who have isues with depression.

 

[taniaaust1]

I think the more important question regarding ME and depression is what the rates really are. Most (all?) of the BPS research into the matter uses grossly inappropriate questionnaires where physical and cognitive symptoms themselves are considered indicative of mood disorders.

Maybe I'll start a poll here, with the one question which actually matters: Are you depressed? [yes/no]

That doesnt take in account that many who have been diagnosed with depression with this illness were diagnosed using the wrong kind of questionaires eg not using ones designed for like hospitalized patients. eg many of the ME symptoms are the same symptoms in depression but not necessarily at all caused by depression in us eg Do you have issues sleeping? (many of us have circardian rthym issue problems with reversed sleep cycles etc), do you feel tired all the time.. oh doh.. of cause we do, we are SICK and things like pain may stop some being able to sleep too.