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True. One thing I'm very good at is being able to disagree. I'm constantly telling doctors no when the things they say do not resonate well enough with me. Sometimes they may say things that are plausible, and I will agree as a route worth considering, but if I feel what is being said is way...

I experience this too, and in the past, early in the morning, around 6.00 am my alarm used to sound to start getting prepared for the school run - as it did before I got ill. My symptoms were so severe before I received community care help that I couldn't wake up before my body was ready to get...

This illness is so complex…… My current take is, every day, I wake up tired, perhaps from some metabolic impairment. Despite this, I push through my symptoms which, according to BACME, means I’m going over my baseline. In order to push through, I may be using adrenaline because I notice as soon...

Exactly, and that’s when I started requesting community care supporting letters based on their model.

I never bothered with it myself as an active parent I wasn’t willing to stop doing most things. Based on what was said, if 400 steps is at times way too much then 400 steps is always too much as you need to stay under the level of activity that provokes symptoms. I’ve read a few BACME guides...

This is what I was told to do. In order to avoid PEM I shouldn't do lots of things even if I felt like I could without sufficient pacing and I should use a step monitor to help understand my limits.

My dealings with that particular consultant were bizarre...... We never met, but somehow I received an FS diagnosis even though her colleague's assessment said I had CFS/ME. She also emailed to say I should see Dr Weir. :cautious:

No one seems to know why she left the fatigue clinic at the time either........

She also abruptly left the RFH fatigue service whilst developing the guideline.

This recording may explain more about it around 14.00.

This model comes from the part-time RFH fatigue clinic part of the Infection and Immunity Service. An explanation of the pathology of CFS/ME also formed part of GET (that's how my hospital records read). During the explanation, I was presented with the above model and was told this is what was...

I know it is well expected for practices to change over time, but the way I’ve experienced the changes to the healthcare system, I like to refer to it as pre-recession primary care and post-rescission primary care. Before austerity measures took place I remember GPs’ would diagnose anxiety and...

Apparently, due to personality disorder.

The Dysregulation model - I am very familiar with it. IF you were given a diagnosis of CFS/ME at Royal Free fatigue clinic and provided with therapies, it was based on the clinic’s ‘dysregulation’ model, which explained ME as a physical disease involving the hypothalamic–pituitary–adrenal-axis...

Lucky for me, who also ended up in IAPT, and was discharged according to not having any phycological disorder and requiring supportive CBT for ME.....

What's silly about this is FND can get diagnosed due to a lack of ruling out other conditions, and in this day and age GP's are discouraged from carrying out vast amounts of blood tests. My current neurologist labelled me FND, even though I keep saying my symptoms are real. :nerd: I requested...

This is a very important topic you raise @Tilly I find the small amount of patients on forums are more knowledgeable about what ME is and how it is often mistaken for FND, etc. But away from the forums, especially when the clinics direct you away from joining, many patients do not have a clue...

Wowzers! :jawdrop: When did this happen?

It seems very odd. Do you have a link to where it is registered as a rare disease?

Great letter! Thank you for all your time and effort. :emoji_bouquet: