APPG Minutes – Why Has It Been So Difficult To See What Has Been Discussed?


This blog is a continuation of the blog written on 23rd October 2021 about the difficulties encountered when trying to obtain copies of the meeting minutes of APPG meetings about M.E.

Needless to say that a lot of emails have been received and sent since the 23rd October! I now have copies of the minutes held in 2020 and 2021.

This paragraph, taken from an email received on 26th October 2021 from the Assistant Registrar, Office of the Parliamentary Commissioner for Standards, House of Commons, is important and why I, as MD of Stripy Lightbulb CIC, have now offered to ‘hold’ future minutes on

APPGs are informal and are not funded by Parliament. No APPG is required to have its own website. If a group does have its own website it must include the website’s address on the group’s entry in the Register of APPGs. No website is currently registered for this group.

If a group has no website on which to publish minutes of its formal meetings it must instead make them available on request. Accordingly I recommend you make your request via the group’s Chair, whose details appear on the group’s current Register entry as: Carol Monaghan MP, House of Commons, London

Stripy Lightbulb CIC is a Community Interest Company that works for the benefit of the ME/CFS patient community. The social enterprise is registered with Companies House, is independent, and plays no role within APPGs and so has no conflict of interest. I suggested this to Carol Monaghan’s team on 4th November and have yet to receive a response.

It makes sense to me, not only will people with M.E be able to access minutes whenever they like but it will also prevent Ms Monaghan’s staff from having hundreds, if not thousands, of email requests from patients after every APPG.  In my mind, that makes it a win win all round! Throughout the COVID19 pandemic, replies from any MP and/or Government department have taken 2-3 months and so reducing workloads will have numerous benefits for constituents, members of the public, MPs and their staff.

Patients are asked by charities to invite their MP to APPGs. Many of us do that but then struggle to find out if our MP attended and engaged with the issue.

Over the past 12 months I have had many online conversations with M.E patients who have unsuccessfully emailed Ms Monaghan’s office and elsewhere trying to obtain copies of the minutes. This issue is not limited to Team Foggy and Chris Parkes (mentioned below).

I had a Twitter conversation with Chris Parkes a couple of days later and he advised that he had just received copies of the APPG minutes after contacting Ms Monaghan’s office and requesting copies. Like me, he had also encountered difficulties for a number of months (over a year in my case) trying to obtain copies of APPG minutes.

Chris has added the minutes of the 2020-21 minutes to an online site for anyone to access. You can read them yourself here –

APPGs 2020/21

As I wrote to Ms Monaghan MPs office on 5th November –

The minutes are a bit sparse and underwhelming. Is it usual to only see topics and not details of the discussion content? I know our CIC minutes need to be detailed and transparent. I appreciate that you may not have created these minutes within your office. I’m just curious as to why Long Covid APPG meetings are fully transparent and accessible on zoom for patients and M.E APPGs are seemingly ‘behind closed doors’ with very limited information being shared in minutes.

I still have no idea why obtaining copies of the minutes has been so difficult, whatever the reason,  the lack of transparency and the need for M.E patients to waste precious energy to obtain information that should be readily available makes no sense to me. I had wondered if the NICE review was a factor but looking at the list of attendees there were a number of attendees who would not have been privy to confidential information relating to the NICE review.

To be clear, this is not an issue with charities – as far as I can tell. My only issue was that Dr. Shepherd said in Summer 2020 that the reason the minutes, or details from the APPG minutes, hadn’t been published was due to a ‘backlog’ in Parliament. With hindsight, this was clearly not the case as the minutes/details have yet to be posted on the ME Association website despite now being available via Ms Monaghan’s office.

2020 and 2021 were very important years for our community, this lack of transparency does not reflect that.

Rest well,


Sally and Foggy (OBVIOUSLY)