cUTI_awareness

Mis-diagnosed with interstitial cystitis (IC). Correctly diagnosed with chronic/embedded UTI by Prof James Malone-Lee (10 Harley St), now under NHS LUTS.

[cUTI_awareness @cUTI_awareness]

We are here and we are ready to participate. 🙌 @JoanneMckinlay4

[James Malone-Lee @JamesMaloneLee3]

Gung ho practices influenced mesh outcomes. We must avoid this again. Starting now, we have to put our minds to proper training, certification, mentorship, feedback loops & audit if cUTI is not driven over a cliff by enthusiasts. Patient support groups should participate.

[cUTI_awareness @cUTI_awareness]

@xxChronicutixx @JoanneMckinlay4 @ChronicUTI Completely understand your position. Will try and get the proper accreditation and acknowledge sorted.

[cUTI_awareness @cUTI_awareness]

@xxChronicutixx Don’t know what the issue is here. I’m just kindly asking that you tag me for credit. I’m glad you found the videos useful. I’d ask that now you are aware that you do tag me in future. I just need to know how these are used. Thanks. Can’t PM you, so had to do this by reply.

[cUTI_awareness @cUTI_awareness]

@xxChronicutixx And that’s why I’m politely letting you know. There’s no problem with you sharing the videos. But unfortunately it’s the only way I can keep track of how they are being shared etc. Will leave this here. I don’t want negativity around this account or awareness raising.

[cUTI_awareness @cUTI_awareness]

@xxChronicutixx @ChronicUTI Thanks, I’m not associated with the group anymore, so would just be grateful to know how and when these are being shared. No problem here. But would be appreciative for the tag as I retain IP rights in the videos. Glad they helped.

[cUTI_awareness @cUTI_awareness]

@xxChronicutixx Very glad indeed that these remain useful and informative. It was a great privilege to have the chance to sit down with Prof for these interviews. I’d would be grateful to be tagged where these are shared.

[cUTI_awareness @cUTI_awareness]

@AMRinterrupted Hugely well deserved. What an impressive achievement!

[cUTI_awareness @cUTI_awareness]

@EKashouris Well done Eleanor! Congratulations. Such a major milestone.

[cUTI_awareness @cUTI_awareness]

@soph_nicole94 @RKhasriya @BIIG_UCL @chrisharding123 @BundrickStewart @cuticuk @ChronicUTIAus @ChronicUTI Doesn’t the success of any treatment require a clear line of understanding as to causative aetiology? Don’t understand how this surmounts the correlation/causation problem, which must surely be tacked first? Maybe I’m missing something?

[cUTI_awareness @cUTI_awareness]

@JamesMaloneLee3 I’m so sorry to hear of your dad’s passing. He was precious to so many. He and Matt treated me before I moved to LUTS. He’s the reason I got my life back after 2 decades with cUTI. I wouldn’t be here without him. Thank you for sharing him with us. You’re all in my thoughts. 💗

[cUTI_awareness @cUTI_awareness]

@JamesMaloneLee3 “Where do we begin? Begin with the heart”. Prof, through the darkest of my nights, you brought me safely to morning’s light. The world has been made better by your presence and stubborn persistence. A sharper mind I’ve never known. Thank you for being our constant champion.

[James Malone-Lee @JamesMaloneLee3]

I do hope that this proves to be a useful, readable summary of the urinalysis crisis and its consequences. Sometimes a brief essay can be helpful

https://t.co/FprqXz0wsg

[Dr Agnes Arnold-Forster @agnesjuliet]

Incredibly we're only six days in and just £765 shy of our £3000 target! Please donate or share if you want to see a film made about #HistMed, #ChronicIllness, #ChronicPain, and the gendered relationship between doctor and patient https://t.co/U4GHEgblH8 @Healthy_Scept

[cUTI_awareness @cUTI_awareness]

@KeatingRachelle It’s an utter disgrace considering the explanatory and justificatory science is already there and growing by the day. One starts to wonder why we continue to be ignored. What’s behind the motivation behind it?

[cUTI_awareness @cUTI_awareness]

We are here @NadineDorries. Please give us a seat at the table. Our letter to you explained why #cUTI is such a critical issue in women’s health. We have been continuously silenced and we refuse to be any longer. cUTI needs guidelines. It requires recognition as a condition.

[cUTI_awareness @cUTI_awareness]

@ChronicUTIAus @JamesTitcombe I‘LL NEVER fully trust a doctor again. My experience of #cUTI has traumatised me. I do not use that word lightly. As a woman seeking healthcare, there is always bias. Waiting for @NadineDorries to respond to our patient group’s call for representation at the 12 wk UK gov consult.

[cUTI_awareness @cUTI_awareness]

@ChronicUTIAus This is the bit I find personally devastating... I developed my first UTI in 2003 at 18... 3 days of trimethoprim... cue an immediate embedded UTI. @NICEComms ruined my life and they still refuse to engage with the science of @JamesMaloneLee3 who is currently saving it.

[Jess Phillips @jessphillips]

I am on my doorstep. Sad and angry and determined that our lives and our liberty have got to matter more than they do today. Tonight is for Sarah, her family and all who feel the loss.

[cUTI_awareness @cUTI_awareness]

Still no word from @NadineDorries or @NICEComms but we will continue this battle until the many thousands of women struggling along daily with this condition are final heard and seen. #cUTI #chronicuti Have your say UK ladies, follow the link in the quoted tweet.

[cUTI_awareness @cUTI_awareness]

@Maccclaire @37_male @JamesMaloneLee3 @WeeYin00 @JoanneMckinlay4 Thank you for the support Claire. We do work tirelessly to only promote the science. It’s written into our very community rules. We can get a lot of backlash for this, but we stand strong. It’s the peer reviewed published science alone which we promote.

[cUTI_awareness @cUTI_awareness]

We wrote to you yesterday @NadineDorries at both your constituency and parliamentary contact points. We need your help to get @NICEComms to provide us with appropriate diagnostic and treatment guidelines that actually follow the science. Millions of women are being failed 2/2

[cUTI_awareness @cUTI_awareness]

Happy #InternationalWomensDay What would be amazing is if @NadineDorries on this day could reach out to our patient group ahead of the gov’s 12 wk call for evidence into women’s health inequalities. Women need guidelines for #chronicUTI which @NICEComms continues to ignore. 1/2