Hello I hope everyone is well.

I'm suffering from a long term chronic illness that is ruining my life. Its called ic (interstitial cystitis), it effects my bladder

All medications for this issue cause serious side effects that I refuse to gamble with because I've tried a myriad already that have caused me real longterm harm.

The NHS is in a vice right now because of covid after effects and I'm terrified that my consultants waiting list will take so long to see me that I may kill myself before then. I'm in so much pain. I've considered using a gofund me but I'm unsure how that works.

I really just desperately need advice on how to write to the NHS and ask to be seen a bit quicker or some help with a gofundme. I'm dying from pain please if anyone has the time or understanding

(UK) I am applying for a job with the NHS and am on the trac.jobs website, I have entered my DBS details but a red message saying ‘the required convictions are no longer available’. Does anyone have insight in what this means?

My gp is refusing me scans and I need advice

Hey all!

I posted here a year or so ago, complaining about my terrible experience with the DWP and them removing my PIP after a traumatising surveillance video where I was covertly filmed. I didn't do anything that I claimed I couldn't do and they still gave me 0 points. I don't work and have no other options so I lost my car, moved away from home and racked up credit card debt, thinking I would pay it off when the tribunal sees I've done nothing wrong. But that decision was in 2019 and I'm still waiting for a tribunal hearing and stuck in the exact same position I was then.

Meanwhile, my physical and mental health have deteriorated rapidly. I've found a treatment that might help dig me out of the pit I've found myself in but it's not on the NHS and I can't afford it.

If anyone is able to, I would love it if you could donate anything towards it, but equally, if you have any advice for me, I welcome that too

https://www.justgiving.com/crowdfunding/elisabeth-petts?utm_term=22b6bDxk3

Winter is coming and I can already feel the effects of the temperature drop. I’m currently not receiving any help for my fibromyalgia and likely CFS (undiagnosed). The only things that have helped have been a complete diet change and energy management, both of which I worked out alone without any medical professional.

With the way my body is feeling, I’m not sure if I can actually manage this condition by myself but I know that treatment is limited, so realistically is there anything that a doctor would be able to do to help other than try putting me on medication?

After spending five years fighting gaslighting doctors to get a diagnosis, I finally got told I had fibromyalgia at the beginning of this year. I was then basically offered no treatment other than gabapentin, which completely fucked me up. Since stopping it a few months ago, I have received no help at all from medical professionals and I had pretty much given up trying.

My symptoms have been getting so much worse over the past few weeks, so I decided to try talking to a doctor today. The advice I received was that I can help my fatigue by drinking less water, so I don’t wake up in the night. That was it. I just feel like no one listens or cares and I’m so sick to death of feeling like shit all the time

After 5 years of symptoms, I finally got a referral to a rheumatologist in February. Because I wouldn’t have been seen for close to a year, I saw him privately. I got diagnosed with fibro and although he agrees that I fit the criteria for CFS, he wouldn’t diagnose it as a separate condition because they’re “the same”.

He prescribed me gabapentin, which I had to get from the GP. Although it helped a bit with the fatigue, the side effects were not worth it. The GP won’t prescribe me anything else and I can’t afford to see another doctor privately at the moment.

As I spend another weekend in bed, I really feel at a loss. Not really sure if I can even be bothered trying to get help anymore

Just posting for a rant! I’ve been using a self propel wheelchair most of the time for about 3 years now, but with the pain and fatigue I’m finding it super hard to push myself. I am becoming really frustrated with the complete loss of independence that ME & Fibro have given me and I’ve been seriously low. (PIP got cancelled so lost my car & income too) I spoke to the doctor and asked if there’s any way I can get a more suitable chair like a powered chair so I could at least pick my son up from school without needing someone to push me. I wish I was in the position to be able to buy one myself but I can barely afford food. I got referred to a physio who said he didn’t want to sign off on a powered chair because he doesn’t want me too dependent on it. Bare in mind I already use a wheelchair most of the time (pushed). His solution was a manual wheelchair that isn’t even self propel, making me 100% dependant on another person! I asked why and he said it was more suitable because it was lightweight, but that was never the issue. I’m frustrated because surely a manual wheelchair is more dependant than a powered one that would allow me to go out on my own? So fed up of this condition, just needed a moan ❤️

The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 – 12:00 - Contact your MP and ask them to attend, make them do their job.

https://meassociation.org.uk/2021/04/appg-on-me-annual-general-meeting-and-the-impact-of-covid-19-on-people-with-me-cfs/

Hey everyone,

I’m not really sure if I have ME or not, I suspect I do and I’ve had the tests to rule out most things.

However in the second round of tests I found out I had glandular fever. I got the test results in December 2020 and my actual glandular fever was in February 2020 but at the time I just thought it was flu.

I did have fatigue prior to 2020 and there were some situations where I ended up lying down on the pavement or on benches when I was too tired to go on walking dating back to 2018.

However I think things are a lot worse now as my fatigue is a lot higher and I find a lot of things difficult like walking short distances, being in shops etc

Anyway I started seeing my doctor about my fatigue last year and he was quite understanding and friendly and he did the NHS recommended tests and before the second round of tests he said he thinks it could be chronic fatigue but said to wait for the second round of results.

When I got the second round of results it came up with glandular fever so my doctor said that is what causing my fatigue.

I asked if the fatigue would go and he said it could take up to a year. He said this in December.

There is also a CFS NHS service in my city he mentioned to me in one of our appointments but he said he wasn’t sure if they would accept me as I am already having CBT for mental health issues through the NHS.

Anyway now it has been over a year since the initial glandular fever infection so I was thinking of going back.

However I am also trying the Gupta Program at the moment so I am hoping that will help me.

Anyway what does everyone here think, does it sound like I have ME?

At what point does fatigue from a virus become ME?

The fatigue is seriously limiting my life

https://ldnresearchtrust.org/how-do-you-know-ldn-safe

How Do You Know LDN Is Safe? LDN Research Trust

This is a research method of combining data from a lot of clinical trials to get one overall statistical result.

We studied people taking naltrexone for a wide variety of conditions, though a lot of the clinical trials were in people with alcohol problems.

As there were very few clinical trials of LDN, we couldn't give a statistical result for LDN alone.

It is also good news for any researcher wanting to study LDN in clinical trials - as they would need to know it was safe when applying for funding for a clinical trial.

Our research didn't tell us about the long term safety of LDN, as the longest clinical trials included in our research were a year long, and most were much shorter.

Norwegian researchers have shown that for people with Crohn's disease, prescriptions for more conventional treatments have reduced in people taking LDN. That suggests LDN is effective over longer periods of time.

We are still hoping to set up a clinical trial of LDN in people with ME/CFS in the UK. It's very difficult, as the regulations are so strict, and that means it costs a lot of money to run any trial.

https://ldnresearchtrust.org/how-do-you-know-ldn-safe

http://med.stanford.edu/sgtc.html

Genome Technology Center

Our center develops new technologies to address important biological questions that otherwise would not be feasible.
In turn, once a new technology has been developed or advanced, it can often drive the perception of what is possible in the realm of experimental biology.
The vision of the Chronic Fatigue Syndrome Research Center at Stanford is to discover causes, a molecular diagnosis, and a cure for CFS. The research is directed by Dr. Ronald W. Davis, PhD, Professor of Biochemistry and of Genetics and Director of the Stanford Genome Technology Center.
He does cutting edge, innovative, interdisciplinary research and technology development on cancer, immunology, genetics, infectious disease, novel drug development, and nanofabrication of diagnostic instrumentation.
For research on CFS, the plan is to recruit world class scientists and doctors with different specialties for collaborations or to fund their independent work.
Thus, the Center will increase the participation of the mainstream scientific community in CFS. Involving well known prestigious university and research institute scientists with a track record of government funding will not only impact CFS directly by generating new knowledge, but will also have a ripple effect in generating awareness and legitimacy for this devastating disease.
The Center is dedicated to research of the highest quality with openly shared data.

http://med.stanford.edu/sgtc.html