New thinking regarding ME and about time too

Thank you for the link. Interesting reading.

Thank you for this link. My cousin has had this illness for over 40 years, at times she has been in a wheelchair.

For about 10 years I also suffered from Post Viral Syndrome for anything up to six months after having a viral infection and, while I never consulted a doctor about it so was never in a position to be offered psychotherapy, I found all attempts to get myself going by trying to increase my activity rate just made my condition worse. the best help to recover I found, with what was always a temporary problem, was to work within my activity level and not push myself unduly. Thankfully I haven't had pvs for a long time

A very interesting article. I am signed up for a Futurelearn course starting on Monday 26th called Making Sense of Health Evidence: The Informed Consumer This is exactly the kind of flawed research that (I hope) we will be armed to counter.

Thank you for the link, it makes intresting reading, especially as I am managing a flare up at the moment. I have been lucky and have had thoughtful treatment guided by my description of symptom aggravation, I am aware many are less lucky and this thinking may be helpful to them.

The link is exactly why I am so skeptical of so called "experts". Grr. They can actually be dangerous.

As long as you read the "other" experts - the ones who know how to conduct a study properly - you are in no danger.

Obieone you might like the online course I was talking about earlier. It shows you how to tell a good study from a bad one, so that you don't follow the wrong advice. (free and open to all)

Everything I read up on ME after I was diagnosed with it said to rest as soon as you felt the symptoms* coming on.

*in my case, nausea, various aches and pain, blah, blah... fatigue doesn't even begin to describe it.

Same here bags It's seems to be so hard for people (non-sufferers) to understand that it's not just 'feeling tired' - oh, if only!

Thanks Elegran.

But most people just wouldnt do that.

I was diagnosed 26 years ago, mixed diagnosis with fibromyalgia. Once the condition became better understood professional advice was and continues to be to stop before the symptoms escalate. I gauge tolerance via experiments with pacing. Tolerance can vary day to day. A month ago my base line was an hour, the best it has ever been. A severe flare up means today it is 10 minutes for most activities. Graded excercise programmes often conflict with these fluctuations. Locally the NHS runs courses to support people with these diagnoses to better manage their condition. The importance of as much exercise, in whatever form, as each individual can tolerate is highlighted, as is the importance of pacing and the monitoring of baselines, graded exercise plans are not recommended.

True, obieone most people get their medical information from what they read in the papers or online. Journalists are notorious for looking for the sensational stuff and ignoring the important details. It is up to individuals to either pester their GPs for the latest accurate info or to apply their own common sense to what they read.

GPs are frequently as prejudiced and uninformed on illnesses like ME as the rest of us. In fact many GPs are just prejudiced and uninformed, full stop. Too many times members of my family have suffered because their GP, dismissed serious problems as being trivialities inevitable 'at their age', or 'at your time of life' or have misdiagnosed ills because of similar prejudices.

Absolutely.
If something isnt in their book, or on their website, it doesnt exist.

And if cancer does not manifest itself in a textbook manner, it can be months before someone picks it up.

Doctors are not omnisicient. They spend their careers learning new stuff. Some things, ME and various cancers among them, are very difficult to diagnose.

And some things, like headaches and backaches, are very difficult to treat.

The course I mentioned earlier Making sense of health evidence is proving very good. It starts with seven media reports of "health news" and asks us what our responses are to them. Later they will go behind the headlines. It takes 3 hours a week, for four weeks and is free. If you don't like it, you can bale out at any time!

Examples of the headlines -

The Mirror: Two chocolate bars a day can slash the risk of heart disease and stroke - 15 June 2015

The Independent: Scientists find a link between cat ownership and schizophrenia - 12 June 2015

The Express: Careful Kate! Doctors say skinny jeans are a serious health hazard - 23 June 2015

The Telegraph: Marriage is more beneficial for men than women, study shows -12 June 2015

Elegran, does it matter how long you take over it? Some weeks I could concentrate and do it, others I just couldn't. At the moment 30 minutes at a time on the computer is my limit or exhaustion kicks in - it will be better than this, just a flare up which will pass. Your thoughts about the praticalities would be welcome. I don't want to set myself up to fail.

It all stays there once the course has begun, so you can dip in and out for as long or as short a time as you want, and you can go back for as long as you like after the course is finished. There are videos (they seem to be varied lengths, from about two minutes to about 10) articles (not too long,) links to optional relevant stuff, many chances to discuss things with others who are from all over the world. There are no "exams" but there are quizzes with multiple choice questions so that you can check that you taken it all in.

The educators all seem very pleasant, no knuckle rappers or ear clouters.

You could join it, have a look at the videos and srticles, then leave if you don't fancy it.

Sometimes patients go to doctors multiple times,and are basically fobbed off.

Lack of money means things are not invesigated when they should be?

Or are some doctors prejudiced and uninformed as M0nica says.

I think some people knew from the beginning that ME was not in the mind. GPs and the medical profession were wrong.

Not all GPs, not all the nedical profession.

I agree.

My feeling is that many GPs feel constantly under pressure to save money, so will not commission tests or refer to a consultant even when the need is clear.

DH presented his usual GP with the classic signs of Type 2 diabetes. He was also overweight and with high blood pressure, she dismissed his symptoms, which included extreme tiredness, as to be expected at his age (early 60s at the time) and still working.

We made an appointment with another GP, who listened to the same symptoms, said he considered them to need investigation, picked a small gadget off his desk and pricked DH's finger, showed him the result and said.' I think you have Type 2 diabetes'.

Difficulty diagnosing illnesses with varying and vague symptoms or rare problems, I understand. Dismissing patients who have classic symptoms of high incidence medical problems has no excuse and, from personal experience, this is happening far too often.

Thanks elegran. I'll investigate when this current flare up has settled a bit. Sounds ideal.