Mitochondrial function profile for overseas CFS sufferers - how to get it done
THE FOLLOWING ANNOUNCEMENT APPLIES TO OVERSEAS PATIENTS AS WELL AS UK PATIENTS
CURRENT SITUATION WITH RESPECT TO NEW PATIENTS AND ALL TEST REQUESTS
Please note that due to Dr Myhill’s extremely heavy workload the following policies will apply as of November 2015:
1. No new patient consultations are currently being accepted, nor follow-up consultations for former patients who have not had an appointment with Dr Myhill within three years.
2. Patients who have had a face-to-face or telephone consultation with Dr Myhill may order any test they wish and have an interpretation of such as long as they’ve had an appointment or regular contact within the last 3 years.
3. ‘Correspondence only’ patients (i.e. those who have never spoken with her at a consultation) may only order repeat tests or a test that has been recommended in a letter from Doctor Myhill and have an interpretation of such – no other tests sorry.
4. All test requests from non-patients are currently suspended.
Ordering the test
Complete the long questionnaire from the page Medical questionnaires. Enter the name of the test at the bottom of the questionnaire.
Cost and payment
The test results will be sent to me and I will write to you with an interpretation which you are welcome, indeed encouraged, to show to your GP.
The total cost of the order for the Mitochondrial Function Profile consists of:
- Price of MFP £260
- my interpretation of the results £165
This gives the total cost of service of £425
The "payment section" in the page How to order tests will give you the available payment options.
The test kit will be posted to you after the payment has been received. It will be posted as a Royal Mail Airmail packet. Royal Mail delivery information:
- Delivery aim to Europe in three to five working days
- Delivery aim to the rest of the world in five to seven working days).
The kit will contain blood tubes, address labels for the 2 laboratories and information. If you need supplies for taking blood, such as needles, syringes or vacutainer kit, please email Rosie as soon as you are able so they can be send with the kit.
Avoiding nutritional supplements before the test
I am often asked whether any nutritional supplements should be discontinued prior to the tests. There is no need to stop the supplements you are taking; however, it is important to list the current supplements in the questionnaire so that I am aware of your nutritional regime. Where you are on your current supplement regime is the baseline. After all, if the supplement regime was giving you the level of wellbeing that you were satisfied with, you would not be paying for more tests. Thinking logically, what you are taking is not sufficient and the tests will identify the weak spots in that regime.
Shipping samples to UK
To avoid any last minute disappointment and embarrassment, please, make sure that you have all the shipping arrangements in place before you have blood taken. We have heard of cases where samples were spoilt because there was no delivery company (such as FedEx) booked to collect them.
Preparing blood samples for transport
The samples for Acumen Laboratory go straight in to the blood tubes without any additional preparation.
With the Co Q10 sample (which is going to another laboratory, i.e. Biolab in London), the ideal situation is to get the sample centrifuged and the plasma separated. The plasma should then be shipped to reach Biolab within 3-4 days. Because of this preparation, the samples could be sent to Biolab by Air Mail post if your country’s postal service offers a service that will guarantee delivery within 4 days maximum. This option is likely to apply to European countries.
It is very important that the samples are not frozen throughout their journey, so ask the courier company if the samples could be transported in the cockpit or the passenger cabin of the aircraft and not in the unheated cargo hold (the low temperatures in the hold will spoil the samples). However, it is our experience that this is not always possible. If they refuse to carry the package in the cabin, then you will need to insulate the sample. Some thick polystyrene insulation (box or slabs arranged around the samples taped in place with parcel tape) which is as airtight as possible should protect the sample adequately. For additional protection you can wrap the package in aluminium foil before putting it in an envelope. Our experience over the last 2 years or so is that very few samples has been spoilt due to excessively low temperature!
The packaging of the Biolab sample is then exactly the same as the other samples, i.e. to prevent it from freezing. This way of preparing the sample gives additional protection to the sample if there is a delay in transit. However, I have to say that most people have sent un-separated samples for the CoQ10 test in the past and they were always viable, but you would need to select a 48 hour courier service. So, it is up to you to decide whether to have the sample centrifuged or not (and it also depends on whether you have access to this facility).
Please, do not freeze the samples prior to shipping them – keep them at room/ambient temperature. It is important to label the samples carefully. They should be well packaged to absorb any possible leakage and to protect from knocks and bumps.
Transporting blood samples to the UK.
Many samples have been successfully delivered to the two laboratories from all over the world. The 48-hour transit time is ideal for the samples, but if you can only arrange a 72-hour delivery, that should be fine most of the time.
VERY IMPORTANT - You need to use a carrier such as DHL or FedEx or other to deliver the samples to Acumen in Devon, and ask for a 48 hour delivery (absolute maximum of 72 hours).
- Please, ship on a Monday or Tuesday only.
- On the paperwork of the courier company enter the value of the contents as £1 to help avoid any customs and excise charges.
- On the courier company forms enter contents as: “Non-infective human blood samples for medical tests.”
- Also, write these words clearly on the outside of the package: Non-infective human blood samples for medical tests - NO COMMERCIAL VALUE. "Exempt Human Specimen"
- when completing the FedEx and other courier company forms, please tick “Bill Shipper” for any such customs charges to avoid delays with processing the delivery of your samples.
- You will find more guidance on the FedEx website in the following document: FedEx Packaging Guidelines for Clinical Samples
Sending samples from Australia
An Australian sufferer, Rhiannon, who was the first person to successfully send her samples for the Mitochondrial Function Profile to the UK, has now set up a forum for Australian CFS sufferers who are trying (or intend to try) my CFS protocol. The forum is now on Facebook:
This is a message from the forum administrator:
You will need to request to join, and once your request is approved you'll be a member. If you have any questions about how to use the new group, just get in touch via this email address: firstname.lastname@example.org or post on the forum itself. If you have never used Facebook before and need a hand, get in touch and we'll try to help.
And a message for those who have visited the forum before
The forum has been moved to its new location on Facebook because the original location got spammed. We will try to move important info over to the new group as we can. We apologise for the inconvenience but hope this will be a positive move making it far easier for people to chat, share info and support.
If there are other tests you would like to have, you will need to let me know what they are and I will make enquiries about whether it would be possible to arrange them in the UK.
Sarah Myhill Limited :: Registered in England and Wales :: Registration No. 4545198
Registered Office: Upper Weston, Llangunllo, Knighton, Powys, Wales LD7 1SL, UK. Tel 01547 550331 | Fax 01547 550339