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Very detailed and thorough rebuttal of the whole article in this very long but useful thread. Worth a read for those with access to x/twitter. I don't know how to share for those not on twitter,but have taken and attach a screenshot to part of the first post as a flavour.

Because they did it "properly"/ believed hard enough, it seems. But yes. Being less facetious, exactly. Surely that is the interesting question ...??

There are multiple issues with this article, but for me the most egregious, and that frustrates me the most (barring the painting all patients as crazed activists part) is that it isn't a discussion about the efficacy of the methods for some people; it is complaining about being silenced, and...

This one is usually the one quoted; Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial https://pubmed.ncbi.nlm.nih.gov/34586357/ Edit to add: there is a thread on it on S4ME Further edit to add: this thread...

This is similar to the Hawthorne effect in time and motion studies. Do you happen to know if any specific studies regarding people being less likely to complain when they feel cared for? Thanks. I am curious!

Yes. Exactly. I am in contact with the chair of ForwardME, as she is a leading member of MELN

I think it needs to be a multi-pronged approach with PQs, yes, a petition, but a very public campaign by, realistically AfME as the people involved in DecodeME and SequenceME. Something loud, visible and something that individual patients can get involved in as well.

Given how long proper research has been held back, and how much ME&LC cost the economy, and successive governments insistence on getting long-term sick folks back into work, this seems like a no brainer to fund - and mere drop in the ocean given the costs of not doing anything. A point I and...

ME Local Groups Network UK has a thread: Thread 'UK: ME Local Network' https://www.s4me.info/threads/uk-me-local-network.24332/ We are up to 32 group members nationally and will be five in August

Exactly, instead they seem to have forged a partnership for more of the same, but worse, faster. And only ask people for their opinion where they are new to the illness so don't understand the history, and/or think that something is better than nothing and are grateful for anything, without...

Which I, clearly naively, thought they had learned from, and yet, here we are again. This makes me incandescent with rage and feel completely powerless that we will ever make progress. I am beyond frustrated, and actually quite scared as to where this is going. Good people are using all their...

Yes. I cannot understand how MEA got here. I find it terrifying that they are taking us in exactly the wrong direction and at great speed.

Ah. Of course; I should have realised; it's the patient's fault :rolleyes:

Why? If it's all thoughts and deconditioning, why doesn't this treatment work for everybody? Aren't you immediately invalidating your own argument?

I know you were sharing it for the one third, one third thing quote but "Often there is an organic trigger...can get trapped in vicious circles of monitoring their symptoms, restricting their activities beyond what is necessary and getting frustrated or demoralised. This causes more symptoms...

Thank you @Andy - again! :thumbup:

Is there any kind of political campaign to write to MPs, lobby the Secretary of State for Health and kind of petition? Our local group is meeting with our MP next week, and I have drafted a PQ for him to ask about funding the rest of this project, but it would be great to have a specific ask...

Thanks @Andy :thumbup:

How can we best support this? Is there a campaign that we can get behind? Is the best place to contribute as individuals through the action for me genetic research link?

Well played :thumbup: