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Research into Forum Use by People with ME/CFS

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi again everyone,
....I also want to add that there is absolutely no need for anyone to opt out. This research is not associated with Phoenix Rising (though they kindly gave me permission to post here to about it) and no-one is under any obligation to take part. If anyone would like to do an interview, then that would be great, but I am also happy to answer questions and to receive comments and suggestions on here or by email (ellen.brady@postgrad.manchester.ac.uk) regardless.

Thanks,
Ellen

Hi Ellen,

Another interesting (and sad) point is that by interviewing only ME patients in the UK, you won't get a representative sample of ME patients and their use of the internet. The UK is one of the hardest countries for ME patients to get medical help--which will probably be reflected in how UK patients use internet forums.

It is possible that, due to lack of availability of ME specialists and/or sympathetic GPs who want to learn, UK patients are put in the position of needing to "self treat" more than patients in some other countries--though because of the world-wide lack of doctors competent in this field, this is one of the common reasons to participate in internet forums.

If you chose to use an interactive internet platform for your research, you could interview patients from all over the world and perhaps get a more representative sample

Sushi
 
Messages
15,786
Many of you have mentioned specific studies about the Internet and ME - if you know any further details about those studies or even had the titles to hand and could send them on to me, that would be greatly appreciated. I have tried to read as much as I can but I am sure that there are articles that I am missing.

Here's a recent one, and I think it cites some of the older ones: http://shortreports.rsmjournals.com/content/3/5/32.full

Despite an introductory claim that the symptoms are of unknown cause, they later presume it is a mental health and/or somatic/functional disorder. It also takes the typical path of assuming that ME/CFS patients share personality traits, namely being overly active.

Very typical psychological assumptions with no basis.
 
Messages
7
Location
Manchester, UK
Hi everyone,

Thanks again for your comments. I decided to just interview people in the UK for a number of reasons. I am based at the University of Manchester, so speaking to people in the UK means that I can travel to them for face to face interviews. While this means that the sample of interviewees will not be representative of the experiences of people throughout the world, it will be useful in understanding the experiences of people in the UK and within the NHS. Hopefully this will mean that the findings will be of more interest to researchers and doctors within the UK as it will reflect the views and opinions of people that the NHS comes into contact with.

In other words, by making the sample less representative of the general views of people with ME across the world, focusing on people within the UK makes the sample more representative of some of views of people with ME in the UK - which may include their views on the difficulties of getting specialist medical help, as you've mentioned.

Valentijn, thank you very much for that link. I had come across that article before but it is very interesting to hear your perspective on it.
 

PhoenixDown

Senior Member
Messages
456
Location
UK
http://shortreports.rsmjournals.com/content/3/5/32.full said:
effective, evidence-based interventions
Their idea of evidence-based is telling patients that they aren't capable of knowing whether or not their symptoms are worsening, or even whether they have any symptoms at all ...there are no scientific tests for this stance, just a cultural tendancy to call unknown medical conditions mental or malingering. However the media keeps reporting this stance as "evidence-based" it's rather misleading. Boom and bust cycles don't explain the underlying illness that we experience even when we avoid boom & bust.

Fact is that there isn't really an effective treatment that works well with a wide range of patients. This is because the illness labels in use today cover too many different illnesses or variety of similar illnesses.

http://shortreports.rsmjournals.com/content/3/5/32.full said:
possibly due to the unique challenges they experience in the health care system.
Why doesn't it say because they are not usually believed by their primary care practitioners & society as a whole, which is more specific & accurate than "unique challenges"?
 

mfairma

Senior Member
Messages
205
Ellen,

If you have not already done so, I would recommend that you review the clinical care primers recently put out by the IACFS/ME and the ME-ICC. Additionally, if you wish to understand the illness, you should review the CCC and ME-ICC case definitions and a selection of patient testimony read at or submitted to the US government advisory committee, the CFSAC. The former is particularly important because relying on the Oxford definition will result in your work describing a different patient population than that characterized by the ME/CFS case definitions. An additional resource, which I have not been able to review myself, is the book Osler's web.

If you wish to contribute to patient care, you need to learn a lot about this illness, particularly the role that the different case definitions play in research and, ultimately, in shaping public perceptions of the illness. There is no one resource, today, that can explain to you the many fundamental issues critical to understanding this illness. As a result, learning about it will take a lot of time and effort. Unfortunately, if you fail to spend that time, your work will likely be worthless or potentially even harmful. I realize how harsh that sounds, but it is the reality. This illness is complex and has a history to match. Superficial understandings and erroneous assumptions about the illness have dogged us in the past and continue to dog us. I hope that you will spend the time necessary to develop a real understanding of the disease and I wish you luck.

Matt

P.S. When you learn about the history of this disease, you will understand the skepticism you are encountering here and will likely encounter in the interviews you conduct.
 
Messages
7
Location
Manchester, UK
Hi everyone,

Thanks again for all of your comments and I'm sorry about the delay in getting back to you. Your comments and links are really interesting and it's great to hear all of your perspectives. My background isn't medical so I can't comment on any advancements in treatments, though I am trying to read and learn as much as I can.

My research has previously looked at online social support for parents, and I was interested in expanding this research into long term illnesses and to look at patients' experiences of using the Internet to look for health information or to talk to other people with similar conditions. For people with long term or chronic illnesses, it can be difficult to access general networks of social support, such as visiting friends or family or attending community groups due to problems with pain or mobility.

For people with ME, there can be additional barriers to accessing this support, as you may find it hard to find people who have had similar experiences or have a similar perspective about your illness and its origins and symptoms. It is possible that the Internet plays a particular role for people with ME, as it allows you to contact people at your own pace and in different geographical locations who may have similar perspectives and be able to offer specific advice. I want to look at the views and experiences of people with ME who use the internet to see if this is the case, and to see how the Internet compares to other sources of social support, such as family, friends and health professionals.

The difficulties that many of you have described with doctors, researchers and the general public perception of ME are a large part of the reason that I'm looking at ME, and the role that the Internet can play in supporting people with ME.

Ellen
 
Messages
7
Location
Manchester, UK
Hi Snow Leopard,

At the moment I am just looking at people with ME, but over the next few months I will be talking to people with other long term illness about their use of the Internet.
 

user9876

Senior Member
Messages
4,556
Hi Snow Leopard,

At the moment I am just looking at people with ME, but over the next few months I will be talking to people with other long term illness about their use of the Internet.

If it were me I would try to do a couple of test interviews first with people with various chronic illnesses. Then reflect on what you are hearing. Also relflect on what you see on different forums. This should lead to a better structured interview process.
 
Messages
32
Assuming that Ellen has done her homework, she will be aware that there is a school of thought (the wessely-school) that people with M.E. or CFS are simply phobic (hysterical) and deconditioned. These theories have led to the 'treatments' Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) being widely touted for the illnesses.

Notwithstanding the fact that these therapies have been disproven as treatments - the circular reasoning of wessely-school theorists permits them to continue recommending them.

Common amongst the 'findings' of GET/CBT research are references to 'maintaining factors' that supposedly perpetuate the illnesses: i.e. 'secondary gains' in the forms of insurance or state financial support; sympathy and attention, etc; and other advantages that encourage the 'sick-role'.

From a wessely-school perspective, internet usage would be a source of reinforcing the 'sick-role', encouraging patients to believe they really are ill, seeking medical validation from other patients and treatment/management suggestions that add to their delusion that they are ill; and thereby depriving them of the opportunity to accept the psychosocial model.

From a completely different perspective, the internet provides disenfranchised, stigmatised and neglected patients suffering from terrible illnesses the opportunity to share experiences and knowledge; gain learning, encouragement and endurance; as well as contributing to the fight to get themselves and their fellow humans their medical, financial and social rights.

I do not see how Ellen's research can produce findings that could not be exploited by the wessely-school to show how patients, not satisfied with convincing themselves that they are ill, now use the internet to validate their hysteria and to reinforce it in others. I also cannot see how Ellen's research can contribute to the support and protection of some of the most neglected and abused patients.
 

user9876

Senior Member
Messages
4,556
I do not see how Ellen's research can produce findings that could not be exploited by the wessely-school to show how patients, not satisfied with convincing themselves that they are ill, now use the internet to validate their hysteria and to reinforce it in others. I also cannot see how Ellen's research can contribute to the support and protection of some of the most neglected and abused patients.

Its clear that certain psychiatrists will bend whatever they can to meet the theories that they espouse. However a more detailed understanding of who, how and why people use forums could, if done well, be used to show the many issues with their regression modelling. One of the reasons they can get away with claiming cause from correlation is that they are too lazy to do the underlying analysis that would back up their theory. Regression analysis can be a useful tool but it suggests areas of interest to look at and investigate structurally - it doesn't imply causation.
 
Messages
32
I agree that the wessely-school will bend what they can, but my view is that what they cannot shape to fit with their theories they simply ignore. Psychosocial research into pwME/CFS has never, so far as I can see, contributed to the wellbeing of patients except when research results can inform patients about themselves and their illness. They can get that from forums like this one. Even if physicians or other researchers read psychosocial research to better equip themselves to help patients I am afraid that the result is, (has been) and will be more psychosocial explanations for the illness and less reasons to conduct biomedical research. I have seen this happening for over 20 years and frankly I am fed-up with being an interesting subject in an interesting situation.
 

Persimmon

Senior Member
Messages
135
Ellen,
You won't be able to establish how representative your sample is in terms of severity of illness - hardly any proper epidemiology has ever been done on ME/CFS, and so no-one knows what a distribution curve of illness severity in ME/CFS looks like.
Illness verification is the biggest issue you'll face. mfairma's message above is spot on. There's no point doing a study on ME/CFS if you don't select a sample of patients who actually have the disorder. The debate over diagnostic criteria is a battlefield. If you let in patients who meet the Oxford criteria, you'll consequently have cohort members with no neurological symptoms, and yet particular neurological symptoms characterise this disorder. (WHO has recognised ME as a neurological disorder for decades.) Similarly, Jason has demonstrated that if the latest CDC case definition is used, 40% of those who are only clinically depressed would qualify for the diagnosis of ME/CFS, notwithstanding that they don't have ME/CFS. Your sample will be meaningless unless you pick a particular diagnostic approach, and stick to it closely. You cannot use a "one or the other" approach, including anyone with a diagnosis of ME/CFS (let alone merely accepting people on the grounds that they tell you they have ME/CFS). Whichever diagnostic criteria you decide upon, you'll make enemies. Then there's the issue that many doctors lack the experience/skill to properly diagnose the disorder (and hence mightn't be capable of reliably applying a given set of diagnostic criteria). This is why most serious research projects in the field rely on recruiting from the practices of established ME/CFS clinicians.
You'll upset a lot of people - and play into the hands of those with biased, anti-scientific agendas - if you proceed but merely produce pseudo-science. Sorry if this sounds cynical, but the history of research into this disorder is fertile ground for cynicism. I wish your project well.
 
Messages
7
Location
Manchester, UK
Hi everyone,

I'm sorry for the delay in getting back to you, I hadn't received any notifications that there were new posts on the thread.

As I've said before, I can promise that I don't have a hidden agenda and am not interested in trying to spin the results of this research; I am just interested in hearing the views and experiences of people with ME, which is why it's great to hear from all of you. I do agree that there will be issues with how representative the sample will be, as there are in the vast majority of research studies. However, that is something that I am aware of, and hope to put together a snapshot of the opinions and experiences of people with ME, including barriers to diagnosis and treatments and difficulties with health professionals, as many of you have mentioned.

As this research is qualitative rather than quantitative, as interviews are being carried out, it is relatively exploratory, and it won't be possible to look at cause and effect or any of the factors associated with statistical analysis. Generally, though not always, qualitative research is carried out to get the perspectives of the people involved in the research (in this case, people with ME) and can help to guide the direction of future quantitative research. In order to represent a range of people, I decided to invite people who identify themselves as having ME/CFS to take part in an interview. I am aware and will be acknowledging the differences and discrepancies around the diagnostic criteria, but I would like to include people who may have experienced difficulties receiving a formal diagnosis so that they can express their opinions about these difficulties if they wish.

Thank you again for all of your comments!

Ellen