Chronic Diseases

[Irish-Cow]

Please all watch on DrBean Medical lectures YouTube his interview 4 months ago with Dr Stephen Phillips on chronic diseases. There is a follow up interview with Dr Phillips 3 months ago. Really worthwhile.

[desquinn Partner Volunteer FMAUK Trustee]

Can I ask why and how it relates to fibro?

[Irish-Cow in reply to desquinn]

If you watch it, you'll understand. I'm not a medical person but all these chronic conditions are so little understood, this man gave me a lot of hope for some more light being shed on them. I've never been on meds myself but he speaks about meds I hear people in the group being on, or having been on, and I think it might give people a lift, as he had himself badly suffered a chronic condition and found a solution to his own. He's not saying there's a simple solution for every person at all , but I did feel it would not be a waste of anyone's time to hear what he has to say. Of course no one has to watch it... But I felt it's worth sharing and giving people here the option to. do so. I'm not plugging him or anything. But I'll leave it up to you to leave or delete my post if you think it's not appropriate here.

[desquinn Partner Volunteer FMAUK Trustee in reply to Irish-Cow]

we have had a policy when people put on links to random videos that they explain what they are about and how they are relevant. Rather than waste everyone's time to go and find out that this is not relevant to them and to fibro.

This is a support group for fibro not all chronic conditions so while tangents do happen there are other groups for lyme, MS, thyroid etc.

I looked at Dr Been and saw a lot of general medical stuff but a lot of covid and our previous discussion so did not look at the others.

It does not seem related to fibro IMO

[Irish-Cow in reply to desquinn]

No problem.. if you've watched the video and found it doesn't have relevance to fibromyalgia.. and as admin wish to delete my post... I'm new to this .. not even sure it's fibromyalgia that I have... seems to me that many of the chronic conditions are interlinked or cause unknown, or unidentified... or one leading to another, or whatever.. and so difficult to get diagnosed absolutely with any definite label in many cases... possibly because it's so complex to get to root causes...

[Poppysunny]

Thank you Irish-Cow for taking the time to post the information. Even if it helps one person, you've done your bit!

[Irish-Cow in reply to Poppysunny]

Thanks. I was happy to hear one of the other doctors drBean interviewed which I watched last night, Dr Bruce Patterson, who was explaining what he is learning about covid-19 and vaccine long hauler cases and developing treatments for them , say that he planned to go on and look into the other chronic conditions like fibromyalgia etc because they were so similar and that people had been suffering for decades from these with little support.

[Poppysunny]

It's about time somebody did!

[desquinn Partner Volunteer FMAUK Trustee in reply to Poppysunny]

there are actually plenty of people considering this and looking into it, But the answers are not easy to find. Also finding things in research does not mean they can translate to clinical practice.

[Poppysunny in reply to desquinn]

It was just a figure of speech. I am fully aware there are plenty of people researching this disease so I don't need educating on this one. Thanks for your info anyhow

[desquinn Partner Volunteer FMAUK Trustee in reply to Poppysunny]

Sorry I am quite a literal person

[Irish-Cow in reply to desquinn]

Yes. I didn't mean to give the impression that I thought or the doc was saying that the end was in sight or anything. He was clear it was hugely complex. But I do think that because groups of independent specialists are studying these covid-19 patients so intensely, with all the equipment they need to do so etc and just using existing drugs, they may learn something new that can help all inflammatory type conditions. Any extra resources and expertise thrown at it is positive.

[desquinn Partner Volunteer FMAUK Trustee in reply to Irish-Cow]

I appreciate the hope and optimism but I have been involved with things for close to 2 decades (eek) and could be a bit jaded or a realist when it comes to the research process (15 years is quick as a reference) and have seen many hopeful things end on the rubbish tip. Fought with many over this is the next big thing and that why are we not supporting it ..... the pile is high but I am still optimistic and hopeful.

Also quick correction but important one, fibro is not an inflammatory condition. From what I have read so far I would be more hopeful that ME/CFS will benefit more/quicker (*) but I think it will help us.

* delete as appropriate.

[Marty52 in reply to desquinn]

There is no room for becoming jaded' or 'realistic' in our fight to survive. We have to keep our minds open and be prepared to think 'outside of the box.' It is not uncommon to discover something extraordinary and world changing completely by accident! I am extremely grateful and thankful to anyone and any teams whose area of research is the many unexplained causes of chronic pain. No unsolicited cencorship, please! We're grown-ups!

[desquinn Partner Volunteer FMAUK Trustee in reply to Marty52]

"No unsolicited cencorship" unfortunately butts against keeping things on topic with relation to fibro. So we try and find balance.

Being jaded or realistic is not a negative as long as your self aware and open minded but every Sun story on Red Wine and how it can change your life on Monday and Kill you by Friday is testament to being realistic. Something may be around the corner but research moves slowly and the corner is more like a slow bend over years.

[LisaSnow FMA UK Volunteer in reply to desquinn]

Didn't know "solicited censorship" is a thing....

[desquinn Partner Volunteer FMAUK Trustee in reply to LisaSnow]

closest I could think of is Mary Whitehouse that campaigned for family values on TV. I I know there are US equivalents but could not name any

[Marty52 in reply to LisaSnow]

😂