David Tuller: My brief encounter with Prof Crawley

[anni66]

Thank you for the suggestion.

I will pass it on and I am almost certain that cost will be a prohibitive factor, so if people will be prepared to crowd fund,, that would be wonderful..

Can you give me an idea of the price, please?

Thank you!

You need to go through a functional practitioner. It' s around £300 - need to get blood draws which may be an issue if GP is hostile. Any friendly nurses could do thus though.You can order via Sarah Myhill' s website - it is extra for interpretation, but i' m sure there are plenty if people here who could interpret.

 

[Countrygirl]

You need to go through a functional practitioner. It' s around £300 - need to get blood draws which may be an issue if GP is hostile. Any friendly nurses could do thus though.You can order via Sarah Myhill' s website - it is extra for interpretation, but i' m sure there are plenty if people here who could interpret.

Thank you @anni66 .

I will pass on the details.

 

[Sasha]

You need to go through a functional practitioner. It' s around £300 - need to get blood draws which may be an issue if GP is hostile. Any friendly nurses could do thus though.You can order via Sarah Myhill' s website - it is extra for interpretation, but i' m sure there are plenty if people here who could interpret.

A private consultant can order a blood draw at a private hospital. It's all more expense, obviously, but it's possible.

I wasn't aware that there was a blood test (ATP) that would indicate problems in PWME, though. Is this solid?

 

[MEMum]

I would happily help with funding. The ATP test done by Acumen is currently being assessed/hopefully validated by Oxford scientists, including Karl Morten. It is funded by ME Association and Jamie, with ME, is working for a few hours per week on it as well.

When my daughter first had the test I looked into it a bit. There were a few papers published re its use in cigarette smokers, but this concentrated more on toxins/adducts on DNA from smoke.

I do not know whether local GPs etc would accept it. It is in the order of afew hundred pounds I think.

 

[anni66]

I would happily help with funding. The ATP test done by Acumen is currently being assessed/hopefully validated by Oxford scientists, including Karl Morten. It is funded by ME Association and Jamie, with ME, is working for a few hours per week on it as well.

When my daughter first had the test I looked into it a bit. There were a few papers published re its use in cigarette smokers, but this concentrated more on toxins/adducts on DNA from smoke.

I do not know whether local GPs etc would accept it. It is in the order of afew hundred pounds I think.

See @Hip threads on it. The published papers that the test has (3) are explained , and some are referenced in recent metabollic research.

 

[MEMum]

Lateral thinking.

How about anyone who is able in UK, from PR, or other charities/places writes to X's MP voicing concern about threats of hospitalisation in light of paediatric primer/even Nice guidelines say GET shd be in agreement with patient. Also list of harms from etc.Plus Karina Hansen's case highlighted in Unrest.

We could even see if upcoming Unrest Screenings could get signatures from concerned viewers...

If her MP got 100 + letters, they would have to look into it. I am near enough to London to meet up with him or her...

Obviously it would be under a pseudonym for child protection reasons.

 

[MEMum]

@Countrygirl I would be happy to help out with paperwork/info gathering/liaising with other groups on this.(or summarising research on harms of GET/pointers from paediatric primer etc)

Am I right that she has till Christmas to "make herself better".

I must spend the bulk of today on a friend's PIP application and have family birthday celebration tomorrow, but I will happily spend time on it next week and will contact you then

 

[Countrygirl]

What age is child ?

@anni66 . Sorry for missing your question.

She is 15.

 

[Countrygirl]

@Countrygirl I would be happy to help out with paperwork/info gathering/liaising with other groups on this.(or summarising research on harms of GET/pointers from paediatric primer etc)

Am I right that she has till Christmas to "make herself better".

I must spend the bulk of today on a friend's PIP application and have family birthday celebration tomorrow, but I will happily spend time on it next week and will contact you then

That is a great offer, and I will bite your hand off .

I have a number of irons in the fire and am very pushed for energy-time, so all such offers will be gratefully accepted.

Yes, the child has until next month to recover. All perfectly reasonable, of course.

 

[GreyOwl]

Here is a link to the new paed diagnosis and mgmt primer. It is a review, written by experts (incl Dr Speight) and published in June 2017.

https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
REVIEW ARTICLE
Front. Pediatr., 19 June 2017 | https://doi.org/10.3389/fped.2017.00121

Peter C. Rowe1, Rosemary A. Underhill2*, Kenneth J. Friedman3, Alan Gurwitt4, Marvin S. Medow5, Malcolm S. Schwartz6, Nigel Speight7, Julian M. Stewart8, Rosamund Vallings9 and Katherine S. Rowe10

• 1Division of General Pediatrics and Adolescent Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, United States
• 2Independent Researcher, Palm Coast, FL, United States
• 3Pharmacology and Physiology, New Jersey Medical School, Newark, NJ, United States
• 4Yale Child Study Center, Harvard Medical School, University of Connecticut School of Medicine, Newton Highlands, MA, United States
• 5Division of Pediatric Gastroenterology, Hepatology and Nutrition, New York Medical College, Valhalla, NY, United States
• 6Drexel University College of Medicine, Philadelphia, PA, United States
• 7Paediatrician, Durham, United Kingdom
• 8Division of Pediatric Cardiology, New York Medical College, Valhalla, NY, United States
• 9Primary Care/Chronic Fatigue Syndrome Clinic, Howick Health and Medical, Auckland, New Zealand
• 10Department of General Medicine, Royal Children’s Hospital, Murdoch Children’s Research Institute, Melbourne, VIC, Australia

 

[kirstenthomson2000]

How completely awful for this mum and child, i'm so sorry for them, it's hard enough living with this illness without this nightmare scenario. I'll happily write a letter if you let me know what to put in it. Surely someone like their MP, who is outside the bubble, would be horrified that this was happening. If a dr knowingly relies on prejudice rather than science that's negligence and a scandal, and when it involves a child as well, or even several children! Even the rubbish NICE guidelines don't recommend CBT/GET for severe ME. How awful. Let me know when you've decided what to put in the letters. Kx

 

[Deepwater]

How about anyone who is able in UK, from PR, or other charities/places writes to X's MP voicing concern about threats of hospitalisation in light of paediatric primer/even Nice guidelines say GET shd be in agreement with patient.

Nice Guidelines also only recommend GET for mild to moderate cases ("Cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) should be offered to people with mild or moderate CFS/ME"), so the GP and paediatrician should also be made clearly aware of this. I know it is likely that they would get round that obstacle by rediagnosing the illness as refusal syndrome, but that would be another hurdle for them and not very easy to pull off if there were test results showing biological malfunctions.

I would certainly contribute to cost of tests, and ask friends and reasonable family members to do the same, and to ask people they know. . . But I realise time would be of the essence.

Also, I know the poor mother is frightened of the consequences of a public campaign, but actually this kind of abuse, like all abuse, thrives on the victim's silence and that is the only reason the BPS crowd are threatening towards families about the consequences of going public.

 

[MEMum]

Dr Paul Worthley, who used to work at Burrswood, might be able to help. He works from Shoreham, but is prepared to see people. As X is 15, he may consider seeing her. I do not know if he has seen youngsters before. He attended the Crowboro' screening of Unrest and is certainly keen to get the psychogenic mytrh that has harmed PwME for decades, dropped.

 

[Countrygirl]

I do know one of you at least

Hi, my friend!

Yes, and it is your neck of the woods too.

 

[fingers2022]

Hi, my friend!

Yes, and it is your neck of the woods too.

Haha, dangerous team.
OK, I'll catch up with the thread.
If anyone cares to PM me, I'll get back to make contact.

 

[Large Donner]

@Countrygirl I can make a donation also to any tests required if the mother needs some crowdfunding.

 

[MEMum]

The Christmas recess for MPs is 21 Dec to 8 Jan. Gives us time to submit letters to local MP and cc info to others who may be helpful, such as Countess of Mar, MPs who watched Unrest, speaker etc.

 

[fingers2022]

Just had a quick scan of the thread.
Sorry, didn't realise it started with DT vs EC (more great sport!).
What it has morphed into all sounds quite familiar.

As a taster, here's the latest on my son's paediatrician:
http://www.bbc.co.uk/news/uk-england-devon-39329907

With all due respect to Jane & Nigel (TYMES Trust), they are thinly spread and can't engage directly in every case. Their support for us over the phone and by email was way beyond the call of duty.

I would like to volunteer to be the appointed advocate for this case. No one needs to know that I have ME...lol, no one could prove it anyway.
I am MD of a community interest company and have a degree in applied sport and health science (personally, I am skeptical about the ATP theories, but mito dysfunction may well be a factor).

If I can be of service, it's quite good timing for me. Please do ask.

I'm not religious, but when my family went through this, our advocate was the son of the Archbishop of Canterbury.
It's always good to network.
Have you ever thought that esther crawley is synonymous with smelly bug?

 

[fingers2022]

The Christmas recess for MPs is 21 Dec to 8 Jan. Gives us time to submit letters to local MP and cc info to others who may be helpful, such as Countess of Mar, MPs who watched Unrest, speaker etc.

With respect, from experience all of that is a BIG waste of ATP!

 

[Countrygirl]

You are all fantastic! Thank you folks!

I am waiting for a reply from mum. She is very stretched as she has much to cope with and it takes a while for her to respond.

We have some wonderful offers of help here and it may be necessary to do some crowdfunding and if this is so, I may tap one of you to start this, if I may. After all, this is all about team work.

When I receive the next message from mum, I will tell her about the newer offers of help and suggestions. I have passed on the earlier ones and waiting for her to think about them.

Whatever we plan, obviously, must be organised off the main thread, as I am sure you understand, but I will keep you updated.