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I know someone who is struggling with this at the moment. They will hopefully be switching to some a different type of medication soon which will help manage, but not cure. Several members of my extended family live with constant pain. Sometimes, when the underlying condition worsens, it...

In my own case, the "rules" definitely hurt. Taking naps as an example - I found I felt better all round & slept better if I had some bed rest during the day ( not all day but if I was up in the morning I would go back to bed in the afternoon) and if I needed to sleep, I slept. Everyone, from...

Despite claiming to have some knowledge of ME ,they never quite seem to understand it matters whether the horse is in front or the cart. Sleep problems are a symptom and not a cause. Sleep hygiene doesn't help (even hinders in my experience) because it addresses a symptom without considering...

Not only did PACE not adequately define and record harms but many CFS clinics don't either under the assumption that their treatments can't harm. This flaw has been propagated through the health care system, despite the overwhelming evidence from multiple patient surveys by AfME, the MEA & the...

Exactly. It's all about context and what level of anxiety, worry, concern etc is appropriate to the situation. Appropriate levels of anxiety or worry in the right context are a very good thing. I have some concerns about the risk of fire and that motivates me to install fire alarms. So far so...

Bolding mine. This is definitely true. In addition to wanting to give socially acceptable answers - - Patients may fear that if they don't respond favourably, or ro show willing/cooperation it may impact on further care. Especially if a negative report might be sent to the GP. - With benefit...

Really good blog. :thumbup:

My ME consultant liked my husband coming to appointments even though he didn't say anything for most of the appointment. I tended to forget bad patches, or think I'd been bedbound for a week or so when it had been a month or more. I think most of us are so busy focussing on ways of getting the...

? In my experience hospital staff have been excellent at "treating" my perceived health anxiety. Having an easily visible and recognisable problem the staff, on realizing I had a diagnosis of ME/CFS, witheld treatment - even though it was obvious I was in a great deal of discomfort and getting...

I am concerned. This is the second tweet that seems to imply she believes ME=chronic fatigue. I do understand that social media isn't the best medium to discuss these things but if the starting point if that chronic fatigue is ME rather than simply one symptom of the many that some suffer...

This is a really important point. For a randomised trial patients should not undergo the usual screening process & if Flottorp had a clue she would realise that. The criteria for entry should be a recognised criteria for diagnosing ME- preferably one of the better ones. Then those patients...

I know several people who have been more re less bullied by family members wanting them to do this. The old " if you really wanted to get better.... " Some expected to fund it themselves out of the tiny amounts of money they have adding even more money worries - not an inconsiderable harm in...

With regard to the same tweet - If the GP has recommended LP and a patient struggles with it, is told by their LP practitioner that they are responsible for their own lack of progress or deteriorating, how likely is it the patient will feedback the problems with the GP? Aren't they more likely...

:thumbup: I think @Jonathan Edwards a while back said something along the lines of if you wanted to know if the patient felt better you could just ask the patient. Even where there are objective measurements the definition recovery & harms for any trial should be agreed with the patient...

I fear we have now reached a new era - the era of post-medicine.

Another thing that strikes me about attempts to measure fatigue is that not only is it impossible to measure, we can simply rate as @rvallee says, it also assumes fatigue is one dimensional. It is not. If we are to use the word "fatigue" to encompass such a wide range of feelings then we...

So what? @dave30th has received donated funds from many patients and ME advocates. His only remit ( as far as I'm aware) is to look into matters and report his findings. Whatever they may be. The outcome of the trial will make no financial difference to David Tuller. If we found a cure for...

If there isn't a tsunami of depression then you can bet your life they'll redefine what depression means! This pandemic is a godsend for the MUS, IAPT brigade. No matter what inroads made so far in showing it up for the nonsense it is, they'll be using the pandemic as an excuse for years to come.

:thumbup:

My husband and his colleagues don't seem to fit into any of the groups Sir Simon has "guessed" at. They are complying with the rules to stay healthy, their employer discussed returning to work & some have agreed to go in with lots of restrictions on what they can and can't do. Most will remain...