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I agree re the lack of good data. I had a bout of costochondritis for maybe a couple of months some time in the first couple of years after ME/CFS onset. But it looks as though costochondritis is fairly common in the general population. Maybe there is something about hours slumped in bed, or...

Reference 29 is Kavyani B, Lidbury BA, Schloeffel R, Fisher PR, Missailidis D, Annesley SJ, et al. Could the kynurenine pathway be the key missing piece of myalgic Encephalomyelitis/Chronic fatigue syndrome (ME/CFS) complex puzzle? Cell Mol Life Sci. 2022;79(8):412. That was a bad paper. We...

There are some good points made e.g. The fluctuation of symptoms and therefore 'omics measurements New technologies such as wearables, home testing, better quicker analysis I don't think pacing is a treatment strategy and nor is support of various sorts. These are management strategies...

Reference #18 is A Treatise on the Principles and Practice of Medicine. Designed for the Use of practitioners and students of Medicine. Atlanta Med Surg J. 1867! I don't think it is helpful suggesting that ME/CFS is such an exception from other diseases. Think of sickle cell anaemia - it has...

I am skeptical about the concept of precision medicine when applied to ME/CFS right now. It works in oncology because clinicians have moved beyond 'cancer' to knowing specific types of cancer and how to treat them. And there is information about how people with specific genes respond to...

I don't believe that there are laboratory tests of even some utility in positively diagnosing ME/CFS, never mind 'definitive'. Again, the authors don't seem to have recognised that long Covid is simply the existence of new persistent symptoms after a Covid-19 infection. If someone meets the...

Introduction I'm continuing to get the feeling that the text is just a bit 'off'; it's not tight. This seems to at once be saying things that are vaguely obvious but are also unevidenced. In some respects, doesn't every chronic illness evolve and perpetuate from a combination of biological and...

But I'm not clear what the word 'complex' is saying there - 1. that it's difficult to work out the cause, or 2. that there are many factors contributing to the disease (including possibly psychological ones), or 3. that the disease has many interacting parts, or 4. that there are lots of...

I'm not sure what this sentence is saying. 'Complex' can be a code word for 'biopsychosocial' and 'psychosomatic'. Also, we don't really know that ME/CFS is complex, it's just that we don't understand it yet. 'Multifaceted' can be read as 'biopsychosocial' also - as in, 'yes there was a...

I regularly buy a ticket in the NZ Heart Foundation lottery, it's a raffle ticket essentially, with the main prize being a house. It has better odds than the main government lottery, probably still not great, but someone wins the house. I think the Foundation is decent and I like that the...

Announcement of their 2025 conference - follow the arrow in the quote title to the thread

On that Jeffrey et al thread, there were some accounts of improvement while on anti-coagulants: @Andy noted his experience with injected anticoagulants: @Michelle noted her experience of some improvement while on heparin but did not find that with oral anticoagulants (warfarin and rivaroxaban):

This study on long Covid risk factors Deriving and validating a risk prediction model for long COVID, 2023, Jeffrey et al found that parenteral anticoagulants reduced the risk. It is likely that the people given anticoagulants during their Covid-19 illness in this study were different to the...

There have been a number of case studies suggesting anti-coagulants are useful treatments for long Covid, and a number of doctors are prescribing these, singly or as a 'triple therapy' to long Covid patients, including children. The treatment has tended to be promoted along with the hypothesis...

Yes. I don't think it's hard - just respond to the needs and concerns expressed? Recognise that there are things that need to be better and make it clear that your charity intend to fix them. Possibly you could even include a project to fix recognised deficiencies in your organisation in a...

Yes, as Kitty says, there are organisations that help identify grants, things like disability service hubs. Even just internet searches can throw up interesting options. Helping a charity find such grants and apply for them might be a lot more productive in terms of bringing income in than...

Problem A solution might be for charities to consider dropping the membership fee altogether. Even just the admin is a friction for potential members and a significant cost for charities. At 18 pounds, if the MEA has 5000 members, that's 90,000 pounds. That is not nothing, but take off the...

I remember hearing a researcher a few months ago who was associated with the Dunedin prospective study that followed a sample of over 1000 children born in Dunedin, NZ. It's a well respected study, the participants have provided data on so many aspects of their lives. The researcher said that...

As noted in the first post of this thread: 2021 Appointment of Professor Leslie Findley to be patron of the MEA - starts here, notice of his withdrawal here 2024 AGM, company documents, trustees and historic governance issues discussion starts here Many posts have been moved from United...

The moderation team split the discussion of the MEA's governance issues from the news from this organisation. Discussion about MEA governance issues can continue on this linked thread: United Kingdom: ME Association governance issues 2021 Appointment of Professor Leslie Findley to be patron...