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I've had a letter published in response to the Adamson et al article. It's called ‘Measuring improvement and deterioration in myalgic encephalomyelitis/chronic fatigue syndrome: the pitfalls of the Chalder Fatigue Questionnaire’ I just started a thread about it here...

I have had a letter published in the Journal of the Royal Society of Medicine entitled ‘Measuring improvement and deterioration in myalgic encephalomyelitis/chronic fatigue syndrome: the pitfalls of the Chalder Fatigue Questionnaire’ You can read the letter here (see posts below if you are...

Really sorry to hear your friend is so unwell. It must be worrying for you and for him. To give context to my comments, I was a Speech & Language Therapist in a hospital. In that setting my job was mostly working with people with swallowing disorders, so I was involved in the decision-making...

For context, I’m a Speech & Language Therapist with severe ME. This is a general reply for the thread. I'm quoting some of @Jonathan Edwards ' points as they were relevant to the points I wanted to make. I think plenty of kids who are well able to communicate will be excluded from this...

From what I can see (from a limited google!), home sleep studies are only valid for sleep apnoea e.g. So I'm not convinced they'd be of use. But there may well be other technology that would be. There are apps, right? Yes, I agree, I think the issues need to be ironed out with moderate...

For context, I have severe ME (housebound, not bedbound) and am/was a Speech & Language Therapist. I like the idea of trying to see what, if anything, works, out of all of the management advice that is currently given. And what might do harm. I would vote for doing these trials with people...

And yes, I am Kirke 2017! Not how I usually refer to myself, but thought it would be helpful to keep the post above clear.

Links to papers on patient surveys and to the surveys themselves below. In terms of patient-level evidence of possible harm from GET, there are published papers that review multiple patient surveys, which could be helpful: Kindlon, T (2011) Reporting of harms associated with graded exercise...

Thanks for that. Hm. And the consequences of that can be that clinicians continue to recommend ineffective or even harmful treatments. I did think the fibromyalgia review demonstrated more insight into the issues than ours e.g. and some caveats are stated too: Perhaps, at a certain...

I’m not convinced that the evidence for exercise being effective in fibromyalgia is much stronger than for us. (Although I get the impression that there is less patient evidence of harm.) Would be interested in your thoughts @Jonathan Edwards ? It seems like the fundamental issue of (mainly)...

Regarding the phobia vs fear-avoidance discussion above (a few pages above now!), I was thinking about this 2005 study by Gallagher et al, where “et al” includes Weir (who does not favour GET/CBT) and White (who does) https://www.ncbi.nlm.nih.gov/pubmed/15992572 Basically they took 42 people...

My understanding is that supplementary file 1 bmjpo-2017-000233-SP1.pdf tells us how they used answers to items in other questionnaires to see whether patients fulfilled SEID PEM criteria (and all the others): 2. Post-exertional malaise (PEM) Patient must fulfill all the specification...

I think it’s important to see how the IOM criteria work in clinical populations. I would prefer to see studies done by actually applying the criteria when diagnosing patients, and comparing to other criteria, rather than this post-hoc retrofitting via other questionnaires. And I’d like much...

If you liked Twisk's letter you may also enjoy... the thread with all the GETSET letters here: https://www.s4me.info/threads/getset-letters-in-the-lancet.3139/ and a link to the MEA’s blog on them here: https://www.s4me.info/threads/getset-letters-to-lancet-mea-blog.3188/

Hi everybody! This has led to a useful discussion, I think. Thanks to @Jonathan Edwards for the thoughtful response. The good news is that we agree on what matters; we only differ on just how useful we find the cardigan metaphor. I should explain that I get the joke! I don’t post much...

Any chance we could lose the cardigan jokes? I wore a cardigan in work, a red one (speech & language therapist). I worked with people who wore green cardigans (occupational therapists) and navy cardigans (physiotherapists and nurses) and all kinds of cardigan-free clothing (doctors, medical...

In the section on treatment of “Dizziness and Orthostatic Symptoms”, Crawley states: “Treatment should start with behavioral methods, including increasing activity and movement, increasing fluid intake to 2–3 L a day, and increasing salt intake.57 Occasionally, medication can be used depending...

In their response to the points I raised about severe and very severe ME, Clark and colleagues suggest that the "use of teletherapy for patients too unwell to attend clinic is an innovative approach that merits further research.6, 7" 6 is Clauw's commentary which accompanied the original GETSET...

The ME Association has posted a blog today on the GETSET letters published in the Lancet last week: http://www.meassociation.org.uk/2018/03/the-getset-trial-letters-to-the-lancet-and-a-response-from-the-authors-26-march-2018/ Handily, it includes the full text of each of the five letters (at...

I searched for instances of the word "psychological" in Wilshire, Kindlon et al's paper. I found one: Instances of the word "psychology" were limited to the journal title BMC Psychology and Carolyn Wilshire's place of work. This is another instance of legitimate critique of the evidence base...