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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Chapter 12 Diary Sheets
Thought diary
Some patients found the following sheet helpful in dealing with worrying thoughts about symptoms or other problems.
We know such thoughts can delay recovery (p95)
Activity diary
..Patients do find it useful to have a record of their achievements, especially if they suffer setbacks while on the programme.
...We would advise against keeping a record of your symptoms even thought they are intense and unpleasant at time.
Monitoring and recording symptoms causes increased arousal or activity of the nervous system and increased adrenaline production. This can cause further symptoms which can delay recovery (p95)
Hi, <name removed>, i'm another one that had 'treatment' from Liverpool, and had the same responses from the medical team as you.
Dr X [I know the name, I have removed it] was my consultant prior to his retirement. The first (and
only) time I saw him he answered my questions for me - "you sleep during the day" (I didn't, I worked), "you hate your job" (I loved my job and was up for promotion) - clear he had a set stereotype of who has ME.
He sent me on a year long 'treatment' programme run by Doctors in the Liverpool Tropical School of Medicine, consisting of GET/CBT and resetting body clocks.
All the group tried these through the year and put forward reasons why it wasn't working (if they did work, surely this would show up in a year of treatment ) but the Doctors were set on what they believed - this was 'deconditioning' not ME. There was no discussion, and if you weren't on board you were being negative.
We were given tons of their literature around GET/CBT, and how if we 'reset our body clocks' we will sleep better and therefore feel better-simple as that! One guy in the group was a builder lugging
around bricks, cement etc every day, he asked how could he be 'deconditioned' doing so much exercise every day!
We were told to do something even on our worst days, even if it was only 3 pedal rotations on an exercise bike (exercise bike was their recommended fitness tool and we were all encouraged to get one or get access to one).
The tone was that after diagnosis, we were in a bit of a 'sorry for ourselves' depression with having ME - all 'treatments' were 'one size fits all regardless if it applied to you or not.
That has been my 'treatment' to date - 7 years on from getting ill, it's tragic. Tragic that when I try and apply for sickness related benefits (having lost my last 3 jobs after relapsing) I have these Doctors giving evidence to DWP about my condition - needless to say this has gone against benefit applications
So if you have ME you hate your job, you're very inactive, you'refeeling sorry for yourself and you sleep erratically by choice.
Looking at my own graph it would seem that, apart from the occasional very minor 'blip', I have pretty much 'flat-lined' and therefore am as deranged as I was when I started
Although one might say it wasn't a direct test of the claims, the FINE trial was based on the information from the Liverpool clinic:Are they testing these claims? They don't sound impossible to me (although the third box seems a bit silly). It seems really premature to tell patients that this is what's happening, but a lot of it sounds plausable to me.
The (recently published) FINE trial was largely unsuccessful (no significant differences at follow-up in any of the five outcome measures they reported, even though it was a large study).We previously reported on a large-scale hospital-based trial in Liverpool, with out-patients suffering from CFS/ME, of a treatment termed "pragmatic rehabilitation" [26]. The treatment is based on a model proposing that CFS/ME is best understood as a consequence of physiological dysregulation associated with inactivity and disturbance of sleep and circadian rhythms [27]. We have argued that these conditions may be provoked by a number of biological and psychological factors but are often maintained by illness beliefs that lead to exercise-avoidance. The essential feature of the treatment is the provision of a detailed explanation for patients' symptoms, couched in terms of the physiological dysregulation model, from which flows the rationale for a graded return to activity. The explanations for various symptoms of CFS/ME highlight the interaction between psychological and biological factors. They are given to the patient both verbally during an initial discussion with the therapist and in the form of a fully-referenced manual, which has been developed in close collaboration with patients who have successfully completed the treatment. Having taken control of their symptoms through a programme of graded activity, normalisation of sleep patterns, and simple anxiety and stress-reducing procedures, patients are better able to consider the role of psychological and social factors in their condition.
I think they most likely think "getting people to behave normally" (my words) is the answer and looked around for reasons to claim it might work.It's a bit of a shame that we've been so badly treated that I really don't know whether the '3 Box Model' is a genuine attempt to understand CFS which they're now busy trying to prove true or false, or just a load of guff come up with to try to entice stubborn CFS patients into accepting their medicine.
Yes. Of course, they have actometers and when they got AfME to agree to it in 2001, they were using actometers at the end as well as at the start. But somewhere along the way, they dropped the actometers at the end (so we don't know if people are actually doing more) although still get the patients to wear them for a week before the trial.If the PACE trial included before and after measures of the thickness of the heart wall, oxygen consumption, adrenalin production, etc, etc, it would be genuinely interesting.
Thanks Suzy, I was thinking I could market the booklet as a cure for low blood pressure
I have some more info to post but don't have the energy at the moment, but will hopefully get to it soon. Though that booklet was the main thing.