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We have a very long thread on Paul Garner here: https://www.s4me.info/threads/paul-garner-on-long-covid-and-me-cfs-bmj-articles-and-other-media.15629/ I wouldn't class him as an ME/CFS researcher. I doubt he has ever been involved in any ME/CFS research, he's just jumped on the BPS bandwagon and...

Some who say they had ME/CFS and recovered like Parker and Landmark and Gupta have done or are doing really awful research on their versions (Lightning Process) of BPS nonsense which they claim cured them.

I have just reread the abstract. I don't begin to understand what this sentence means and can't relate it to my experience at all. And what happened to the defining feature PEM? Thank you Todd Davenport. I almost wish I hadn't left Twitter so I could see how the conversation goes and could...

Is this single barely statistically significant, and presumably not corrected for multiple comparisons, probablility of p=0.04 the sole basis of Wallitt's stuff about effort perception etc?

I suspect more will be added once the BPS people get their act together and see the stuff about deconditioning and effort perception that feeds into their narrative. Wallitt has let us down so badly.

I didn't read it as extreme exercise. They did a single CPET, not the two day CPET often used to research ME/CFS. They don't seem to mention any follow up of whether patients had PEM after the CPET that I can see.

The main study paper is now published. This thread is closed and discussion moved to the new thread: Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

Is this a fatigue/deconditioning study or an ME/CFS study?

I skimmed most of the article. Allowing diagnosis by Fukuda criteria is unforgivable. I continue to be concerned that the researchers don't understand and don't even mention delayed PEM. That and the concentration on deconditioning when they should have used a sedentary healthy control group...

Some of the companies that get offers don't end up getting funding. The due diligence is left to the dragons to do after they make their televised offer. Perhaps the BBC should run a parallel series of 'these companies turned out to be duds once the dragons sent their accountants in, and these...

It seems to be applying light to acupuncture points, not bathing the whole person in light.

Best ignored I think. It's in an alt med journal.

Hi Amy, thank you for explaining about Dr Gabor. And huge thanks to your mother for all she continues to do on behalf of others.

Crossposted with others. I agree it was the best TV coverage I've seen. I watched the segment on ME/CFS. I thought it was good. Merryn Crofts' mother spoke movingly of their experiences raising particularly the issues of medical disbelief and social workers and safeguarding issues, Sonya...

Some posts have been moved to the Forward ME thread.

I don't think that's fair to the APPG in that they produced a good report that fed into the government setting up the process to try to get better provision for pwME. An APPG is just a few MP's whose constituents have persuaded them to focus on the topic. It has no official standing and no...

Hi again, @sarahtyson. I am pleased that you are willing to engage with our members. As I'm sure you will understand, many here have suffered hugely from gaslighting and part of this has been misuse of PROMS to draw all sorts of incorrect and harmful conclusions about ME/CFS and about pwME, so...

We are not allowed to give medical advice on this forum, but I hope you are under the supervision of an expert for this treatment. We have a thread that might interest you where members have discussed their experiences with low dose hydrocortisone...

I think this illustrates nicely the problem we all have of extrapolating from our own experience. Your description of your experience of PEM for people with mild ME is far from my experience when my ME was so called mild and I was able to work part time. With apologies to other forum members...

I too have a problem with 'baseline'. I understood it to mean the level of daily activity which is likely from past experience to avoid major crashes that last for days or weeks and massively reduce my already very limited activity and make me feel much sicker. Yet the questions seem geared to...