I haven't posted on here for a long time - Facebook took over especially in the UK, because we didn't have a fabulous forum like this one.
We are in a tricky situation in Britain - for the last 2 years the National Institute for Clinical Excellence (NICE) has been drawing up guidelines for Lyme testing and treatment. They tell our NHS doctors what they must stick to and once they publish a guideline it will last for years.
A Draft of the Lyme Guidelines was published ahead of the due date (April 4th 2018) last autumn on September 25th and according to the rules, stakeholders such as many Lyme groups and advocates, were invited to respond. We had already taken part in the original scoping part of the process in April 2016 - but all my group ever got back as a response was "Thank you for your comments". Pretty annoying to just get that, and with no minutes released to see how anything was properly discussed.
Nothing was received back then, nor in our response to the September draft. However, all the UK newspapers were on the same day last September pronouncing "Lyme guidelines at last" with quotes from doctors on the committee and the head of the NICE organisation.
It's against their own rules to publish a draft as if it were the final product - yet the next day it went onto the NHS web sites, and a Nurses web site too, as if everything was finalised.
Not only will the NICE Guidelines restrict our chances here in the UK, but other countries in Europe are likely to copy them.
Standing advice on the Public Health England web site at the moment is not so restrictive in its wording, compared with what NICE have written - and PHE do give doctors some leeway. NICE will effectively be nastier than what we have now.
So we began a petition a few days ago, with help from a lawyer to phrase it properly, and already we have 2,500 signatures. At least 2 ILADS doctors have signed, one from the US, and one from Germany.
It's an international effort. Would you lymenet folks like to add your signatures too?
Having only deemed 3 clinical studies acceptable for review of management and treatment of patients with persistent symptoms and found NONE acceptable for review of “non-specific” symptoms of Lyme they have based all management and treatment guidance on data from only 315 Lyme positive patients (see overview above) .
Additional to this, they have stated that this data, on which they base their guidance, is of low to moderate quality.
We can only assume that this means that their guidance is also of low to moderate quality. This cannot possibly be the standard to which we expect our physicians to guide patient care.
NICE state that they did not review any clinical literature with respect to assessment and management of persistent symptoms related to Lyme disease and rather insinuate that these people cannot possible still have the infection unless they have been re-infected.
The recommendations include psychiatric help and “symptom” relief, the example given being "heart block" which is seemingly based, not on any quality of data but apparently, on personal opinions from the committee. As such we find these recommendations unsubstantiated, lacking in clinical judgement and sympathy and open to facilitate abuse of the patient.
Andromeda
Posts: 180 | From UK | Registered: Nov 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might want to contact - excellent advocates with all four:
Thanks Keebler, it's really good to see familiar names like yours again.
When I used to post on here, there was almost no Lyme movement in the UK. But we've been building it up especially over the last 5 years- sadly because so many are infected now it seems.
I believe the secretary of ILADS wrote to say she would put the petition on their Facebook group.
Today this letter was posted to Sir Andrew Dillon, the CEO of NICE, from our group VIRAS which I co-founded a few years ago. We have some really good writers in the group, and this letter is a scorcher:
posted
Jenna Luche-Thayer has written to NICE herself a couple of weeks ago, about the make-up of the NICE committee, and today here is what she wrote on UK Facebook Lyme groups:
This NICE stand on Lyme is not based on science, it is based on political and financial agendas. Many of you know this because the NICE draft guideline recommendations were advertised well in advance of the end of the scientific reviews and NICE has been promoting the guidelines for medical use even though they are not finalized.
This petition has solid content, its particular strength is that it was framed it around patient rights and health human rights and the legal mandates of NICE, NHS and the govt with regards to their responsibility to protect your health and well-being, these draft guidelines are in breach of this mandate and your rights.
The medical and scientific debates around Lyme will continue as the disease is so complicated.
However, today, yesterday and every day forward, EVERY patient, recently infected or chronic, has the inalienable right to medical care and this includes treatment options that have already been validated by internationally accepted standards.
There is no scientific or medical reason any Lyme patient should not be able to access this care - these obstacles are political and financial and global in nature.
October 24, 2017, The United Nations (UN) Special Rapporteur (SR) on the right to health, Dainius Pūras presented his report on corruption to the UN General Assembly.
He told his audience, “In many countries, health is among the most corrupt sectors, this has significant implications for equality and non-discrimination …”
He noted domestic and global root causes of corruption, including those related to the pharmaceutical industry, others from “institutional corruption”.
He emphasized the “normalization” of corruption in healthcare which includes practices undermining medical ethics, social justice, transparency and effective healthcare provision, as well as illegal acts.
posted
Thank you Brussels. Switzerland is a great place to be, I once worked there for 6 months. I didn't want to leave when my contract ended; everyone there seemed to be multilingual and it was so clean and unpolluted.
I'm glad to see the count is 3025 now. We are hoping to get to 10,000 before the guideline release date on April 4th.
posted
Essentially they have extrapolated data from 315 blood positive, early diagnosed, easier to treat patients to a population which includes people with long standing disease, immune system issues, co-infections and opportunistic infections. They expect them to respond to treatment in exactly the same way!
Why didn’t they shut down this process when they knew they didn’t have a single piece of acceptable evidence with respect to “persistent” Lyme? Maybe for the same reasons that they didn’t adequately evaluate the PACE trial before inflicting that “guidance”? This is not only bad science but it is unethical and violates a humans rights to adequate healthcare
Theres no way I could have stood by and watched this.
Posts: 4 | From CZ | Registered: Feb 2018
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I live to advocate for Tick Borne Infections. This needless suffering of millions has got to STOP ! Thanks for posting Andromeda13. SIGNED.
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
Please everyone SHARE SHARE SHARE!! One signature is just that but one share could be 10 signatures and if your friends are like mine you'll be getting messages all week too. Ive been asked for advice by three friends and also found out that my husbands aunt recently had a bite and the rash! I'll be going to see her next week!
Posts: 4 | From CZ | Registered: Feb 2018
| IP: Logged |
posted
When a small group of people becomes a larger group of people actively fighting for the same thing, it becomes an opportunity to make changes. Everyone agrees that the NICE guidelines will force yet another failure in healthcare so why isnt everyone actively doing their best to get this message across? Do people think that the government will come to their senses? Do they think that the 'political" route is the only way? There are those who have been actively trying to make changes for 30 years and got nowhere because they worked without support. There is no magic solution only our efforts.
Posts: 4 | From CZ | Registered: Feb 2018
| IP: Logged |
posted
Heres something positive. Yesterday we got 200 signatures!! Thats amazing. Maybe people are starting to realise that they have been had? If the government accepts that this process is flawed now, they can still halt it or reassess what they publish with some dignity. We could work with them to come up with better data and research whilst concurrently actually treating people. Even at this stage NICE could revise the text to state that "the evidence is poor and inadequate such that we are unable to produce guidance in respect of XYZ". It wouldn't involve reassessment of the data and their research recommendations would remain the same (or could be expanded further) A big UK Lyme group are going to launch their anti-guidelines campaign after the publication. Thats going to be some embarrassing media attention for the process especially after 5000 of us have already pointed out that we saw its flaws and offered a way out.
Posts: 4 | From CZ | Registered: Feb 2018
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic