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I've had a video appointment with Dr Barham. She was excellent, good understanding of M.E., didn't rush me, extremely thorough, comprehensive report. AfME's admin is dire though, slow, unresponsive and unhelpful. Don't expect anything to happen in a hurry.

December 2022 Guidance for Primary Care https://bacme.info/wp-content/uploads/2022/12/BACME-Primary-Care-Guide-to-MECFS.pdf

Great thread I'm in the process of putting together resources for health professionals as part of service development in Suffolk. We've included links to NICE guidelines, primers, UK & International resources for health professionals, YT videos, Dialogues, a couple of links on severely...

Work is continuing to develop a new M.E. and CFS Service in Suffolk and North East Essex. A survey has been created which is focused on establishing the priorities of patients, taking into account the new NICE Guidelines. Resources will be limited, so we need to establish what is most important...

Full evaluation report is here https://www.weahsn.net/wp-content/uploads/2021/12/The-Future-Challenges-Replenish-ME-FINAL.pdf Has anyone heard anymore about Kiactiv?

Consensus statement Benefits outweigh the risks: a consensus statement on the risks of physical activity for people living with long-term conditions, 2021, Reid et al British journal of sports medicine https://bjsm.bmj.com/content/early/2021/11/03/bjsports-2021-104281 Consensus statement...

Exactly @Sasha, excellent point, thank you.

I was involved in creating this survey. Thanks for your interest. I'd say complete the survey if you can. Part of the aim of the survey is to explore barriers to heart rate monitoring and why it can be difficult. So it is helpful to know why people have stopped HRM. There are free text boxes...

The survey has 40 questions, virtually all with tick boxes / radio buttons to make the questions easier to answer. There are some free text boxes if you want to add in some extra information about your experience of HRM. There are some demographic questions, questions about the type of device...

@MEMarge Sorry for the omission - the email was sent by Helen Winning, CEO of the M.E. Trust.

I commented on this too, both directly to the M.E. Trust (I use the physio services) and via the online form. Had an email from the M.E. Trust this morning saying that the respective boards have decided to go ahead with the merger. Very sad this is happening.

Probably going to hit 15,000 today, now at 14,755. I never ask F or F to sign petitions, but I did make an exception with this one.

Over 10,250 this morning, at this rate it is going to end up near to the petition to have the Guidelines reviewed.

Now over 5,000.

Nice Pathways for "CFS/ME" appears to have been updated October 2020...

I'm new to this too. A recent summary of research is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463562/ As recommended by the consultant I am taking over-the-counter antihistamines. But I have been advised that they are not enough on their own so have also been prescribed medication...

@Jonathan Edwards As I said a "histamine bucket" is simply how some patients refer to the way that they manage their symptoms. The doctor I'm seeing is NHS, although of course others in this field may be preying on vulnerable people, as they do on those with M.E. I'd much rather try this...

@Binkie4 So sorry you had such a scary time with the vaccine. With regard to histamine ingestion you describe a pattern that I have seen others describe. It does seem that if people who are sensitive reduce histaminein the diet they can sometimes then reintroduce some high histamine foods...

@Milo Thanks for your comments. I don't think I was clear enough in my initial post. The thread is about mast cells so I concentrated on that aspect as group members may not be aware of the interaction between bladder issues and mast cells. My bladder problems likely have more than one cause...

It seems as if I was in the histamine equivalent of rolling PEM before reducing histamine in my diet. It is now much easier to work out foods that are causing a reaction. Hopefully my "histamine bucket" is getting a little less full. @Invisible Woman yes, it is a more boring diet especially as...