FogPod: Recent Episodes
Foggy
ME Foggy Dog raises awareness of Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) at every opportunity.That includes podcasts!Team Foggy talk about everything and anything M.E related.
ME Foggy Dog is campaigning for improved adherence to the NICE guideline, this has included an 'open letter' to the General Medical Council. People from within the M.E community signed this 'open letter' and 73 left comments.
In this podcast, I gave my podcast over to the patient community by reading out their comments/thoughts on this issue.
More info on this campaign - https://www.mefoggydog.org/2024/04/03/urgent-appeal-to-address-non-adherence-to-myalgic-encephalomyelitis-nice-guidelines-in-nhs-hospitals/
ME Foggy Dog launched a new challenge on 17th July 2023.
We are hoping to host a benefit fundraising concert for M.E/C.F.S biomedical research in the week of 16th July 2024, the challenge will rely solely on voluntary contributions of time, energy, skills, and talent.
£1,000,000 is the minimum we are hoping to raise.
Check out www.redefininggravity.co.uk
In this podcast, we talk to Nicola Jeffery and Steve Topple, co-founders of The Chronic Collaboration, about their #DontLetMEDie campaign (Please ensure you use the capitalisation of words correctly when using the # on social media)
Further campaign info can be found here - https://www.thecanary.co/opinion/2023/03/02/people-with-me-are-dying-while-politicians-do-nothing-and-the-nhs-stands-idly-by-enough/
Email : hello@thechroniccollaboration.com
Please share widely and engage with this campaign.
This blog is inspired by a Christmas movie I watched this morning! Watching this film coincides with my 16 year anniversary of living with Myalgic Encephalomyelitis.
This is the blog I refer to during the podcast - https://www.mefoggydog.org/2019/05/16/my-last-well-day/
Don't forget to check out http://www.mefoggydog.org!
This FogPod episode is about how lived experience and boundaries are a key part of advocacy and social entrepreneurship.
Have I got boundaries within my advocacy or social entrepreneurship?
Listen to find out!
Intro music - Esther Garcia Gonzalez/Fifty Sounds - 'Hamburg'
Hi!
I haven't recorded a podcast for a while because of the vocal issues that are the subject of this episode.
Check out the blog I wrote on this topic.
https://www.mefoggydog.org/2022/07/28/speech-and-language-therapy-for-m-e-voice-issues/
Thanks for listening!
Intro music by Esther Garcia Gonzalez - FiftySounds.
'Conflict Between the M.E and LongCovid Patient Communities'.
Thank you Kat, Emma, and Steve for joining me to discuss this sensitive but topical issue.
We are now 2 years on since the start of the pandemic.
We have division, exclusion of M.E from the pandemic narrative, misinformation in Long Covid support groups, and the incorrect messaging from some PwME that ALL Long Covid is M.E.
What needs to change and how?
A group of people from both patient communities discuss this topic in this episode.
Recommendation - PwME and PwLC - Please listen to this in small chunks. Unfortunately, it was such a vast subject it wasn't possible to keep the episode short!
Intro music - FiftySounds; Esther Garcia Gonzalez. Fiftysounds.com.
In this podcast, we talk to 3 members of the M.E/C.F.S community about the need for a new reporting mechanism to report harms from non-pharmaceutical 'treatments'.
This new system will benefit many patient groups including M.E/C.F.S and Long Covid.
ShakeItUp
Please take part and #BePartofChange.
We are campaigning for a new system to report harms from non-pharmaceutical 'treatments'.
Anyone, anywhere, can sign the petition.
All info and links -
https://mefoggydog.org/shake-it-up/
A few of the comments that have been added to the campaign petition by people who have signed-
'I am signing because I was out through GET and got worse. I got blamed for this. Not the treatment. The GET issue affect ME/CFS patients worldwide where currently in Australia we need to do this treatment to access government income and disability support.'
'This is so important. For ME patients becoming bedbound from GET, for autistic children being scarred from ABA. For everyone, just on principle. Anything that has the potential to help (not that either of those examples do in the long run...) can also harm. Both need to be acknowledged.'
'I have M.E and I need to move forward with treatments that work and not to be offered physical treatments that do harm.'
'People, especially women, have suffered enough from punitive treatments by doctors who dismiss, minimise or refuse to understand the severity of their symptoms and prescribe inappropriately. Treatment other than tablets needs equal scrutiny.'
'Complacency amongst decision-makers is causing significant distress to sufferers.
Please sit up & take notice of the harm being done.'
'Being 'prescribed' graded exercise therapy destroyed the little independence I had left. I now need a carer and cannot leave the bedroom with out help. At 35 my life stopped.
There is literally no where to go to complain about the 'treatment'. We need a yellow card system for holistic therapies.'
Thank you for your support.
Don't forget to follow us on Twitter (@mefoggydog), Instagram (@mefoggydog) and Facebook (@FoggyDog)!
We demand the creation of a new mechanism to report non-pharmaceutical 'treatment' harms.
'Non-pharmaceutical 'treatments' are prescribed for many diseases by the NHS. However, patients do not have anywhere to report harms to. There is a widespread false assumption that non-pharmaceutical 'treatments' cannot harm patients.
This petition specifically relates to the issues encountered by the M.E/C.F.S patient community, however, a new mechanism will benefit all patients, with any illness, who are harmed by non-pharmaceutical 'treatments'.
At a very basic level, M.E/C.F.S patients are intolerant to increased exertion (the key defining characteristic is Post-Exertional Malaise) and yet the 'treatment' patients are given is 'exercise-based' - historically in the form of Graded Exercise Therapy.'
PLEASE SIGN - CLICK THE LINK BELOW
https://www.change.org/p/department-of-health-and-social-care-we-demand-the-creation-of-a-new-mechanism-to-report-non-pharmaceutical-treatment-harms/c
BLOG - https://www.mefoggydog.org/2021/11/14/campaign-for-a-new-mechanism-to-report-harms-from-non-pharmaceutical-treatments-a-collection-of-emails/
Thank you for your support.