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I do wonder, though perhaps ethically difficult, if actimetry and some form of video would work . Video would capture any modification of " normal" For example my daughter' s posture changes during/ after PEM. Her muscles and tendons tighten which increases pain so her positioning/ stance...

Thank you @Jonathan Edwards

This

I suspect that the supportive variety of CBT can be a helpful tool. The issue is that people are not aware that there is a different type, so will have more trouble understanding why someone would refuse it. If the " special type" of CBT was explained, particularly as public awareness seems to...

Yep. We are medicalising life.

Given the impact of this research can anyone bring it to the attention of biomedical/ exercise specialists for comment. Perhaps thus weeks conference is an opportunity. This is really dangerous . Too many children have not recovered from similar rehabilitation.

Yes. Our chiro trips are the one thing that gives some temporary relief. Chiro is amazingly gentle, but not local.

Same for my daughter. very tight neck. Tendons/ attachments can look / feel like bone at times.

given the cost of insulin in US you can appreciate why it's not in their interests

Has anyone found anything useful re the formication? This is currently a huge issue for my daughter - it is worse when sleep is poor and the catch 22 is she can't sleep if this is manifest, even if she does actually feel sleepy ( as opposed to exhausted). Looking back though diet and...

For my daughter the following have impact Magnesium makes a significant difference . If not taken fatigue, pain, brain fog increase. CQ10 as ubiquinol Antioxidant My aunt is severely affected and had huge issues with heart palpitations, which significantly reduced after injecting magnesium...

Interesting link from Twitter -

It is worth remembering that we exist in a somewhat parallel universe. The most iniquitous manifestation of the BPS worldview can be seen in @Binkie4 and @Graham ' s posts. The complexities of ME are not understood in a medical system which at best simplifies the condition and at worst denies...

This

Exactly this Fishing to reinforce an established narrative Compare with chronic illnesses...

One for those on NICE guidelines group to highlight.

Will PM

I have concerns re recruitment. Gps presenting info like this to families for direct recruitment to trial ( how many gps can diagnose accurately?) Families not knowing that they did not have to participate. @Tilly may have more knowledge.

From Twitter tonight

I am so happy for @JenB and @Jeff_w . It must be a marvellous feeling, yet difficult to reconcile emotionally. I hope that your remissions continue. ME to me seems to be a common end state; given the variety of triggers, and gradual onset, there will be subsets, or indeed it may in future be...