First Post part 1

[johnsmith]

This is my first post. I have much to say so will do several posts in the next few days. I have done many replies which can be found at healthunlocked.com/user/joh.... Press replies to see what I have written in the past. You need to be logged in to see this.

Some of my replies have been lost. This is because when a user deletes a post all replies are lost.

I joined Healthunlocked over six years ago. Over time I learnt much that is useful from other users. Some of it being how to write better to try and get some of my understandings across. I am on ESA benefits and have been on PIP and of course I suffer from chronic pain. I have been through the legal system and learnt much that is troubling about the medical profession and have met many in the medical profession that are trying to a very difficult job in trying circumstances. I have attended many conferences and seminars run by different health professionals. I have read many science journals and accessed many science papers that were not behind pay walls.

The interesting thing I found about a lot of science published in papers is the extreme focus of the science. This type of focus has its uses. However, many problems in the management of good health and establishing a good quality of life is dependant on many variables which have differing values all happening at the same time. This is in contrast to a science paper which only looks at a single variable. Thus it should not be a surprise if the conclusion drawn by a science paper does not match the experience of a person with a chronic disability.

Once of the ideas which get banded about is evidence based medicine.

medicalnewstoday.com/articl...

describes what a cohort study is. Cohort studies are a type of medical research used to investigate the causes of disease and to establish links between risk factors and health outcomes. This sounds nice and scientific and in theory provides a means of treatments that can be investigated and these treatments can be given to patients with the knowledge that they are evidence based. This can lead and has lead to abuse of patients on a very large scale. Cohort studies are limited in the number of variables they look at. The variable of importance can be totally overlooked and not in the cohort study. Lastly a cohort study takes a large number of individual people with a particular characteristic and looks at their response to a particular event. The medical consultant takes the cohort study and uses it to determine treatment. In the propose the medical consultant often never tries to determine where on the population curve their patient is. What is suitable for one patient on the population curve may be detrimental to another patient whose characteristics lie on another part of the population curve.

One of the quotes I like quoted at medical type conferences is: “You have lots of quality information that is thoroughly unreliable”. What does this mean. Handling a chronic health condition well means handling the many different variables which affect the condition. The tests done on a patient with a chronic condition are done at one point in time under a particular set of conditions. This is quality information. The patient lives with the condition 24/7. And can be exposed over the course of 24 hours differing types of variable and differing values of these variables. The quality information obtained under one set of controlled conditions may not be accurate when the patient experiences a different environmental situation.

“Rigor Mortis: How Sloppy Science Creates Worthless Cures, Crushes Hope, and Wastes Billions” by Richard Harris is an important book. It looks at scientific research in some areas of medicine. It is just the tip of an iceberg that was once very well hidden from the public.

Aaron Swartz is one of the people whose campaign made much research accessible to the public. After his death many scientists took up his campaign to abolish paywalls preventing access to scientific research

en.wikipedia.org/wiki/Aaron...

In 2011, Swartz was arrested by Massachusetts Institute of Technology (MIT) police on state breaking-and-entering charges, after connecting a computer to the MIT network in an unmarked and unlocked closet, and setting it to download academic journal articles systematically from JSTOR using a guest user account issued to him by MIT. Federal prosecutors later charged him with two counts of wire fraud and eleven violations of the Computer Fraud and Abuse Act, carrying a cumulative maximum penalty of $1 million in fines, 35 years in prison, asset forfeiture, restitution, and supervised release. Swartz committed suicide as a result. Access to much research that can help those with health disability owes much to Aaron Swartz

Part 2 to follow.

[Bananas5]

Facinating

x

[katieoxo60]

intriqueing literature, look forward to further instalments. In context the ideas are true, patients with the same chronic disability put into different environments at different times would no doubt show different research results. How we tackle the vast variables is debatable, I still feel it has to be a personal approach to circumstances at the time, according to environmental issues or patient circumstances, not just a one treatment to suit all (as it may not for varied reasons)Hence the reason why I feel care packages in consultation with the patient ,carers & medics is one good way to get better results. Bye for now

[johnsmith in reply to katieoxo60]

Thanks for the reply. I agree with everything you say. You say: "How we tackle the vast variables is debatable..." We need the debate. We need the tools to investigate. We need educators to help us the people with a chronic health disability to investigate ourselves. Our biggest problem is that we have less than five minutes to think something profound when discussing care packages. The supplier of the care package has had months of human time to work out what are the right words to say when delivering the care package.

[katieoxo60 in reply to johnsmith]

Now you have hit the nail on the head, the word is "TIME" we the patient are not involved often in the decisions so those caring for us do not know what the issues are, when assessing us they are the service provider not the service user. There is no time to discuss how our illness affects us , how tablets effect us, how more than one illness intertwines to limit our capacity, the risks from our disabilities, what helps us feel better, the side effects of drugs on our specific illness, the emotional effects of not being able, what changes could be of assistance. All chronic illness /disability sufferers need to give feed back not just a small minority or the carers. The carers input is helpful but only from a carers point of view often on issues of practicality not always to do with patient wellbeing, and what about those who don't have care & are what the medics class as independent we often just accept thats all the services we can have when in fact it does not meet our need. There are thousands of us who never get opportunity to speak if only to change the mode of thinking of the decision makers. So in answer to your reply, correct we do need the means or time to get over our thoughts on how it is to live with chronic long term illness/disability I totally agree with you and sorry if this reply is a bit long winded.

[waylay]

Fascinating!

As an aside, I'm an MIT alum, and the Institute's treatment of Aaron Swartz makes me SO angry!