CORONAVIRUS

[Peter Cobbold]

5 hours ago, iain said:

Peter ......the regulatory process came about and has been refined to what has been acknowledged as the best in the World as a result of the Thalidomide tragedy. I’m sure no one would argue that this is not necessary.

To argue that Pharma has such influence over NICE is frankly ridiculous. Stakeholders included in every assessment include physicians, researchers, patient groups, nurses, gps, charities,.........anyone with a genuine need to be included in the “ cross functional team. Pharma are only involved if they have a therapeutic agent for the disease being assessed and can only draw attention to the published data they have.....their is no discussion on its merit. It’s just to ensure it is included in the evidence case.

Perhaps you could review the 2014 stakeholder document for VitD and gain an insight to the process resulting in the current guidelines and its deficiencies. 

https://www.nice.org.uk/guidance/ph56/documents/implementing-vitamin-d-guidance-draft-guideline-stakeholder-comments-and-responses-table2

 

Stakeholders had no say in defining the recommnede dose and the absurdly low 25(OH_D3 that would result. They had alrready defined deficincy as <25nmol/L: that wasa fail accompli, presented tp stakholders fro minot adjustment. The response of NICE has some choice quotes,

 

Compartmentation of sources of D3 like NICE attampt is ridiculous: incidental and deliberate sum exposure is very important in keeping serum 25(OH)D up, The seasonal fluctuation is very well known. 

===

The emphasis on SureStart and pregnancy reflets  the historical role of D3 in preventing rickets, Other diseases were excluded becasue ther were no big RCTs that NICE  felt able to include. So huge wealth of science was ignored. The Stakeholder list was then drawn up by civll servanrs according to disease states NICE  had RCTs  for - rickets and pregancy,  I see no stakeholder input form any cancer sharity, nor Alzheimer or Parkinsons charities, nor BHF (re hypertension.cardiomyopathy) The list of stakeholders excluded them because NICE had not found any RCTs that pointed to a benefit.  Individual D3-expert clinicians and scientists were not  regarded as stakeholders so NICE avoided what would undoubtedly have been a severe pasting form D3 experts. In short, anyone who thinks that 150 pages of Stakeholder comments has  any utilityn in determining  the correct parameters of 25(OH) and hence IU per day, in not following the science. Stakeholder feedback is spurious, appearing to influence a decision, but in reality it was designed to ensure that the NICE decision was not tested rigorously.

As a result of this dangerous window-dressing gobbledegook UK has the lowest definition of deficincy in the world: 25 nmol/L 25(OH)D3.

This disaster can be traced back to the total reliance oof NICE on a protocol desinged to find the lowest effective dose of a drug, and the exxlusion of all RCts that did not reach acertian size of participants. ALL other science was not acccpeted as evidence. It is a  caastrophic regulatory fialure. Mnay of our diseases are inatrogenoc by ommission...by the NICE structure

Deficiency in a drug wont  lead to host of diseases, though you might not get cured

Deficiency in D3 will shorten your life expectancy by failing to defend you from a host of diseases

NICE uses the same narrow protocol to assess drugs and D3:  physiology is ignored

Peter

====

"NO comment":

DO NOT MEASURE 25(OH)D3:

Edited May 16, 2020 by Peter Cobbold

[iain]

Peter

so now you need to find out when is this due for review and make sure that the relevant interested and professional competent individuals are involved. 

Prior to that happening I would suggest that continued lobbying will result in review of the evidence. Parties may be less than forthcoming in admitting this is the case, but I guess there are many DoH and NHS bodies looking at causality and cor-morbidity on a constant basis and their relation to Covid infection and Severity. 

I'm sorry the system is frustrating but you and other advocates will have to work with that not against it. 

Iain

[barkerwilliams]

Crawfie,

Hope all goes very well for you. Please keep us informed with a daily diary, I for one would be very interested.

Best wishes for a speedy recovery whatever your diagnosis,

Alan

[Crawfie]

1 minute ago, barkerwilliams said:

Crawfie,

Hope all goes very well for you. Please keep us informed with a daily diary, I for one would be very interested.

Best wishes for a speedy recovery whatever your diagnosis,

Alan

Cheers Alan. 

Off to Plymouth @ 3.30 . Our appointment is at 4-4.30 pm , with strict instructions not to arrive early or late. Then to be poked and prodded !!

[iain]

Good luck Crawfie.....been there, but there were no tests at the time.

Ill just say a week in isolation feeling really **** is not my highlight of the year!

Iain

[Peter Cobbold]

35 minutes ago, iain said:

Peter

so now you need to find out when is this due for review and make sure that the relevant interested and professional competent individuals are involved. 

Prior to that happening I would suggest that continued lobbying will result in review of the evidence. Parties may be less than forthcoming in admitting this is the case, but I guess there are many DoH and NHS bodies looking at causality and cor-morbidity on a constant basis and their relation to Covid infection and Severity. 

I'm sorry the system is frustrating but you and other advocates will have to work with that not against it. 

Iain

Iain,  I am cofident that COVID will expose the global mis-handling of D3 advice by the responsible bodies. And will force a analysis of how they were so dreadfully wrong. The evidence that D3 belwo 75 nmol/L is a risk for severe covid is building, small RCTs are  starting, and three UK observational studies are at long last underway ( following the Philippines, Indonesia etc ).Politicinas will nor fail to grasp a safe nation-wide intervention that allows normal life and coommerce to resume. And without waiting for a vaccine or drug. Which nation takes the D3 route to exit, we can speculate. USA has the best D3 expertise but Trump advisors are vaccine proponents. Finland is already above 75, as is Norway. Maybe Denmark will learn form its close neighbours. Poland has expert advice for >75  nmol/L in place and only needs poltical action. At some point a nation will use D3 to exit, and the ohters will scarmble to catch up, doubtless with UK missing the boat and finding the supply of D3 has been sold elsewhere. UK would need about 1 ton per annum, global total producttion is around 90 tons.

Meanwhile pts are dying unnecessarily. Because of your beloved "system".

Peter

 

Edited May 16, 2020 by Peter Cobbold

[SuzanneH]

2 hours ago, Crawfie said:

Well.....started coughing on Thursday, headache , sore throat....Being tested today. 

Fingers crossed its just a summer cold/flu. 

Worse case scenario is that it's "man flu" and we all know that's more leathal than C-19 !!

Fingers crossed for you that it’s not Cov19 or Man Flu. Take it easy.

[ntc]

My money is on many more will have had it from a lot earlier than the start and got though it. 

[john.r.davies]

We are ALL going to get it, one way or another.  We can't stay in purdah until a vaccine is found.

[iain]

45 minutes ago, Peter Cobbold said:

 Because of your beloved "system".

Peter

 

Peter, its not MY beloved system, its THE system. 

Iain

[Peter Cobbold]

1 hour ago, iain said:

Peter, its not MY beloved system, its THE system. 

Iain

 

I have no grouses about the NICEsystem for regulating drugs**, but its use for D3 is manifest nonsense.

** However, NICE need to wise up on D3,  If I were a pharma wanting to game the efficacy of a drug against, say, COVID. I would pick a trial cohort from  a population they know to be D3 deficient. Certainly not from Finland.   D3s actions are so pervasive that, eventually, 25(OH)D3 will have to be embraced as a significnat confounding factor in all drug RCTs.

Peter

[Crawfie]

Thank you Iain and Suzanne,

Well that was another thing off the bucket list !

The test centre was easy to get to and the entire process was well organised. Security is present and you have two checks on the pass code sent to you by email. Follow the instructions given by the staff (a lot if hand signals) and you end up by the test tent.  We had two nurses . I was done first . The instructions of what was going to happen, why they were doing it and how the swabs we're to be taken , was clear. Throat first and around the tonsils. I gagged three times !! Same swab then up the nose. That was easy !!

Given a receipt card. Wife next ....and the super hero she is, no problems with the throat swabbing. 

Have to wait a few days forthe result. 

Impressed by the whole process. Hardly any people being tested though.

In and out in 10 minutes 

 

 

 

[Peter Cobbold]

1 hour ago, john.r.davies said:

We are ALL going to get it, one way or another.  We can't stay in purdah until a vaccine is found.

About 4% have had it in UK, 4,4% in France. So 95% to go .It is going to be looong purdah

https://medicalxpress.com/news/2020-05-france-reopens-population-infected-coronaviruswell.html

The CMO may tell us 99% get mild or symptomless covid. But to we are not stupid, that means 1% get it bad. That's a risk too far for many.

We may see only the young venturing  out and taking  a chance. Getting the next 4% infected may be a challenge for government

Boris is between a rock  and a hard place. Fortunately he knows firsthand what a severe infection does.

Peter

Edited May 16, 2020 by Peter Cobbold

[foster461]

58 minutes ago, Crawfie said:

Thank you Iain and Suzanne,

Well that was another thing off the bucket list !

The test centre was easy to get to and the entire process was well organised. Security is present and you have two checks on the pass code sent to you by email. Follow the instructions given by the staff (a lot if hand signals) and you end up by the test tent.  We had two nurses . I was done first . The instructions of what was going to happen, why they were doing it and how the swabs we're to be taken , was clear. Throat first and around the tonsils. I gagged three times !! Same swab then up the nose. That was easy !!

Given a receipt card. Wife next ....and the super hero she is, no problems with the throat swabbing. 

Have to wait a few days forthe result. 

Impressed by the whole process. Hardly any people being tested though.

In and out in 10 minutes 

 

 

 

Wishing you both all the best. No chills or fever, loss of taste/smell ?

[Peter Cobbold]

St Kitts & Nevis today, UK......................in the fullness of time..............perhaps

start at 39:10

 

[iain]

Fingers crossed Crawfie. My symptoms were quite similar.

4 days of something that was like tonsillitis, then a sore throat and very irritating cough, prompted by exercise or even just trying to talk. A couple of days later, breathlessness that’s was most unpleasant and debilitating. Took some 3 weeks to feel OK on the respiratory side. Luckily my son is an ITU anaesthetist and living in the Cottage next door. We WhatsApp’d regularly on symptoms and progress. I blame the whole thing on my daughter who came down from London, just before lockdown:-) and went down 3 days before me. Ironically she came home on Friday the 13 th March :-)!!! No I’m not superstitious.

Iain

[Crawfie]

2 hours ago, foster461 said:

Wishing you both all the best. No chills or fever, loss of taste/smell ?

 

6 minutes ago, iain said:

Fingers crossed Crawfie. My symptoms were quite similar.

4 days of something that was like tonsillitis, then a sore throat and very irritating cough, prompted by exercise or even just trying to talk. A couple of days later, breathlessness that’s was most unpleasant and debilitating. Took some 3 weeks to feel OK on the respiratory side. Luckily my son is an ITU anaesthetist and living in the Cottage next door. We WhatsApp’d regularly on symptoms and progress. I blame the whole thing on my daughter who came down from London, just before lockdown:-) and went down 3 days before me. Ironically she came home on Friday the 13 th March :-)!!! No I’m not superstitious.

Iain

Thank you Mr F and Iain.

Like Iain I have a horrible sore throat, thumping headache , aches and feel drained. Coughing gets worse when you move around. 

Ive had the bad throat for a while. The coughing started on Thursday .

I'm hoping it's a bad cold !!!

If the results are negative....I will be relieved , but it's no cold / flu I've experienced before.

 

[iain]

Sorry Crawfie...forgot the thumping frontal headache! I didn’t loose my sense of smell....daughter did. If anything my sense of smell is heightened. Strange.

Iain

[Misfit]

Good luck Crawfie, I am really sorry to hear that you have symptoms, I wish you the best. 

Iain I wasn’t aware that you had been unwell. I didn’t notice any mention of it here but then again I’m in and out of the Forum and don’t read everything. I am so glad to here you are on the mend Iain Please keep safe. All the best to you your wife and family

regards M

Edited July 27, 2020 by Misfit

[foster461]

Professor Peter will be along shortly to check on your vitamin D status.

[john.r.davies]

Just to put the Willies up everyone even more, the latest manifestation of Covid is Persistent Covid.

Post-ICU syndrome is wellknown https://journals.lww.com/jaapa/Abstract/2016/04000/Post_ICU_syndrome__Rescuing_the_undiagnosed.6.aspx although perhaps little recognised, that is attributed to the prologed inactivity and mental trauma of ICU treatment, but there are now reports from those infected early but not requiring ICU that their symptoms are persistent.     Prof.Paul Garner, ironically an eminent specialist in infectious disease, has written in the BMJ of his experience since catching Covid in March.  Changing symptoms, all unpleasant but no recovery.  He is still ill, and he is not alone: https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-protracted-illness-need-help-to-understand-and-cope-with-the-constantly-shifting-bizarre-symptoms/

We know so little  about this virus.

[Crawfie]

12 hours ago, foster461 said:

Professor Peter will be along shortly to check on your vitamin D status.

That made me giggle !

Ive been taking multi vits ...not sure that's enough and up on Dartmoor ,sunshine is a bit of s rarity. When the sun shines...spend time fighting of the midges and avoiding dive bombing **** dropping seagulls, starlings and dicky birds.

[Peter Cobbold]

1 hour ago, Crawfie said:

That made me giggle !

Ive been taking multi vits ...not sure that's enough and up on Dartmoor ,sunshine is a bit of s rarity. When the sun shines...spend time fighting of the midges and avoiding dive bombing **** dropping seagulls, starlings and dicky birds.

Crawfie, The multivit could well have tipped the balance in your favour, but we cant be sure.

A multivit is the standard recommendation by PHE, typically 400 IU ( but soem have 800 ).   Holick in his book ( above)recommends sunshine as the D3 last twice as long as from supplements. I take the rays between 11 and 3 whenever its warm and sunny for maybe 10 mins. If when I get covid the solar D3 might last a bit longer (D3 gets used up during an infection).

Our genes also have a role. Response of blood cells (monocytes, macrphages) to 25(OH) reveal we fall into low/medium/high responders.  It means we do not know, individually, how low 25(OH) can go to be safe. I prefer to have a high 25(OH) around 150 nmol/L. - I might be a low responder.

Holick in his book says he takes 2700 IU from supplements and fortified milk, plus sensible sunlight ( in Boston MA) giving him serum 25(OH)D3 of 125 nmol/L ( =50 ng/ml)

Holick is a world expert on D3, a clinician-scientist, and I trust that.

Peter

[Crawfie]

19 minutes ago, Peter Cobbold said:

Crawfie, The multivit could well have tipped the balance in your favour, but we cant be sure.

A multivit is the standard recommendation by PHE, typically 400 IU ( but soem have 800 ).   Holick in his book ( above)recommends sunshine as the D3 last twice as long as from supplements. I take the rays between 11 and 3 whenever its warm and sunny for maybe 10 mins. If when I get covid the solar D3 might last a bit longer (D3 gets used up during an infection).

Our genes also have a role. Response of blood cells (monocytes, macrphages) to 25(OH) reveal we fall into low/medium/high responders.  It means we do not know, individually, how low 25(OH) can go to be safe. I prefer to have a high 25(OH) around 150 nmol/L. - I might be a low responder.

Holick in his book says he takes 2700 IU from supplements and fortified milk, plus sensible sunlight ( in Boston MA) giving him serum 25(OH)D3 of 125 nmol/L ( =50 ng/ml)

Holick is a world expert on D3, a clinician-scientist, and I trust that.

Peter

And that  cheered me up as well.

Thanks Prof !!

[Misfit]

Am I being controversial,  saying I’m pretty sure those of us reading the Form are aware of the potential  Benefits of D3 and possibly risks, it’s for us to satisfy ourselves and determine what’s safe individually perhaps.

At the moment I feel A bit like I’m being forced fed D3. That’s probably just me, What do you feel Peter is it time to let it go?

m

Edited July 27, 2020 by Misfit