Practical Guidance

Practical Guidance

If you have M.E., the following might help you practically:

G.P.

If anyone can recommend good GPs in the Maidstone area for M.E. sufferers, please let us know.

Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a supportive G.P., empower yourself with knowledge about M.E. If you’re too ill to do this, encourage your carer to do this for you. Do be aware that in your search for knowledge, you will find a lot of lies written about M.E./CFS, especially of the psychological/psychiatric kind.

Canadian Guidelines

Get yourself a copy of the Canadian Guidelines, proper title, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners (authors, Carruthers and van de Sande), published 2005. These, along with the International Consensus Criteria, are probably the best medical guidelines for both doctor and patient.  They can be downloaded from this website under ‘Links‘; alternatively, you can buy a hard copy for under £2 from Invest in M.E. at info@investinme.org, or phone 02380 251719.

Why not give a copy of either the Canadian Guidelines or International Guidelines to your G.P?

The New International Consensus Criteria for M.E.

This is an even more recent criteria (2011) than the Canadian.  It separates M.E. as a distinct entity from CFS.  The International Criteria (Adult & Paediatric) can be obtained from us, The Grace Charity for M.E.  Alternatively, it can be viewed and downloaded at National Alliance for M.E. (USA) www.name-us.org

Hospital Booklet.

You might find a hospital booklet helpful, for M.E. sufferers, which can be downloaded from this website under ‘Documents’, or contact us for a hard copy at info@thegracecharityforme.org This booklet mentions drug and chemical advice etc., should you need to go to hospital, even as a day patient.

Treatments

There are some treatments, mainly supplements, which might be worth trying.

  1. VegEPA: this can help M.E. symptoms generally. Available from www.thevegepaformescheme.com
  2. Co-Enzyme Q10: can help both muscular and cognitive problems.
  3. Acetyl L-Carnitine: can also help muscular and cognitive problems.
  4. Enada: mainly helps energy levels.
  5. Vitamin B injections: can help energy levels and help with sensory overload and cognitive problems.
  6. Magnesium injections: can help with muscle strength and energy (too much can give diarrhoea).

Some GPs give the above on the NHS but you’ll most likely have to pay for them privately. You can get some supplements from health food shops. The following might also sell the above supplements:

www.saferemedies.com

If you think you have true neurological M.E., then it’s best to avoid Graded Exercise (a popular therapy) as it could ultimately make your illness worse. Also, beware of another popular therapy, CBT (Cognitive Behavioural Therapy) which often involves Graded Exercise. For further scientific findings and patient surveys on these therapies, please see our paper Saying No Can Be Positive, under ‘Documents‘.

Never push yourself to the point of exhaustion, physically or mentally. A general guide is to do less than you are able to do, so that your body won’t ‘crash’ (relapse).

Helpful Doctors.

The current NHS treatment for M.E. (called Chronic Fatigue Syndrome by the NHS) is mostly Graded Exercise and CBT, sadly. You should also be able to get medicine on the NHS to help with pain and sleep control. Regarding other treatments, e.g. supplements and drugs recommended for M.E. in the Canadian Guidelines, it really depends on your GP if they prescribe them on the NHS. Their hands, though, are greatly tied by the NICE guidelines (National Institute for Health and Clinical Excellence) which currently doesn’t favour treatments outside those previously listed. However, a GP can prescribe a drug outside the NICE guidelines for any patient on an individual basis, if he/she feels it would be appropriate. The GP would have to record why they have taken this action.

All GPs and consultants differ in their treatment and attitude to M.E. patients. If you feel that you’re not getting anywhere with the NHS, there are some ‘tried and tested’ private doctors who have helped some M.E. patients over the years.

 

SARAH MYHILL (private treatment)

NB:  Unfortunately, Dr. Myhill isn’t taking on any more patients at the moment, as she is snowed under.  Please watch her website, which offers much free valuable information, to see when this changes.

Although Dr. Myhill prefers to use the term CFS, she has nevertheless helped some patients of genuine neurological M.E. She offers a test called the Mitochondrial Function Profile test which she believes is helpful for M.E. sufferers. It actually includes seven tests and will involve blood test(s) which are then sent through the post. More about this test can found on her website www.doctormyhill.co.uk Click on Fatigue and then go to Tests. The Mitochondrial Function Profile test currently costs £295 which also includes a letter to your GP.  (The mitochondria is the energy producing part of the muscle.)  Dr. Myhill often suggests treatment with certain supplements.  She is now offering an Adrenal Stress Profile Test through the post (total cost £143).

Dr. Sarah Myhill
Upper Weston
Llangunllo
Knighton
Powys
LD7 1SL

Telephone: 01547 550331
Email:
office@doctormyhill.co.uk

 

PROF. BASANT PURI (private treatment)

Prof. Puri sees M.E. patients privately. He can be contacted through Breakspear Medical. In the past, his treatment has involved Essential Fatty Acids for sufferers.  He has also conducted SPECT scans but is now cautious about them due to radiation.  He tends to be very booked up.

Prof. Basant Puri
c/o Breakspear Medical
Hertfordshire House
Wood Lane
Hemel Hempstead
Hertfordshire, HP2 4FD

Telephone: +44 (0) 1442 261333
Website:  www.breakspearmedical.com

 

WILLIAM WEIR (private treatment)

Dr. Weir treats M.E. from a biomedical perspective.  His basic consultation is £250 which includes a letter type summary of his findings.  More extensive reports would be around £500.  Further tests can be arranged, should he feel they are necessary, either on the NHS or privately.

Dr. William Weir
10 Harley Street
London
W1G  9PF

Telephone:  020 7467 8478

 

 RAYMOND PERRIN (private treatment)

Dr. Perrin has developed a technique for M.E. sufferers call The Perrin Technique.  It is an osteopathic approach, which may include some massage, to help drain toxins from the body.  N.B.: Not all M.E. sufferers can tolerate massage.  Whilst it can alleviate pain in some sufferers, we’ve also had reports of massage worsening pain.

Dr. Raymond Perrin
The Perrin Clinic
83 Whittaker Lane
Prestwich
Manchester
M25 1ET

Telephone:  0161  773 0123
Email:  info@theperrinclinic.com
Web: www.theperrinclinic.com

There are practices outside Manchester.  Currently, Dr. Perrin charges £200 for one and a half hour consultation in Manchester.  He sometimes comes to Hertfordshire, where he charges £250 for a one and a half hour consultation.  There is weekly treatment following the consultation, at approximately £40 per treatment.

BYRON HYDE (private)

Dr. Hyde is a Canadian doctor who specialises in M.E. It may be possible to see him as a patient in the U.K. However, depending on the availability of the tests in this country that he wants carried out, he may require the patient to go to Canada (expensive).  He would want to work with your usual doctor.  NB: Dr. Hyde tends to give a diagnosis rather than offer treatment.

More information can be found at www.nightingale.ca

The telephone number of Dr. Hyde’s clinic is: 001 613 7298995
(remember that Canada is several hours behind, if you phone)

Dr. Byron Hyde
Nightingale Research Foundation
121 Iona Street
Ottawa
Ontario
Canada
K1Y 3M1

 

N.B. (update as from 2014):  In the past, we have advertised Dr. Andrew Wright’s private clinic in Bolton, England.  Currently, Dr. Wright is no longer practising as an M.E. specialist due to legislation by the GMC (General Medical Council).  This is a tragedy, as Dr. Wright has helped many M.E. sufferers over the years, especially by using antibiotics for an infectious cause to their illness.  Some patients say he was the only doctor who helped them with M.E. and Lyme, improving their health.  The GMC charge against him appears to be trivial.  Dr. Wright is now practising as an NHS GP in the Bolton area.

 

NHS Consultants in the U.K.

There are consultants in the NHS who treat M.E. as biomedical.  However, some have requested for us not to advertise this.  Please contact The Grace Charity for M.E. if you require more information about NHS consultants.  (At the moment, this list is very minimal; it also depends upon where you live in the UK.)

There is a hospital in Southeast England which we’ve had mixed feedback about from M.E. sufferers.  It specializes in nutritional and digestive problems regarding the immune system.  It’s mostly private but a few patients seem to get NHS funding.  If you’d like more information about this, let us know.

 

DISCLAIMER:
Although the Grace Charity for M.E. intends to help sufferers, we can’t take responsibility for any ill-effects caused by the above list of practitioners, should you try them.  However, we do want to hear of both positive and negative experiences of the above and other practitioners.

Biomedical Research

Biomedical research is currently being done by the following organisations:

ME Research UK
The Gateway
North Methven Street
Perth
PH1 5PP

Telephone: 01738 451234
Web:
www.meresearch.org.uk

also, by the Nightingale Foundation in Canada (see above details).

Children and M.E.

Children with M.E. might find support from the Tymes Trust. This charity has been set up by former Head Teacher Jane Colby.

The Young ME Sufferers Trust
PO Box 4347
Stock
Ingatestone
CM4 9TE

Telephone: 0845 003 9002
Web: www.tymestrust.org

Severe M.E. sufferers

There is an excellent support group for severe M.E. sufferers from the 25% M.E. Group in Scotland (although members can be from all over the world).

Web: www.25megroup.org
Telephone: 01292 318611

Please see also Useful Links (under Useful Documents page) for other contacts.

Prayer

Get people to pray for you and your carer. Peace of mind and hope are essential for you both as you battle your way through this illness together.

 

TESTS FOR M.E., PRIVATE AND NHS

Currently, there is no specific test to diagnose M.E. but there are many tests which can contribute to making a positive M.E. diagnosis. Tragically, the latter are not generally available on the British NHS. In fact, the opinion from the NICE Guidelines is that M.E. is a diagnosis only after excluding other possible illnesses.

Most CFS/ME ‘clinics’ on the NHS will probably want the following tests done before attending their ‘clinics’:

Urinalysis for protein blood and glucose; full blood count; urea and electrolytes; liver function; erythrocyte sedimentation rate or plasma viscosity; C-reactive protein; random blood glucose; screening tests for gluten sensitivity; creatinine kinase; thyroid function; serum calcium; serum creatinine.

(Please note that the above NHS tests do not give a positive M.E. diagnosis but are used to exclude other illnesses. Although M.E. sufferers often have problems with blood sugar, thyroid etc., the above tests may not be of the correct type to perform for M.E. thyroid, blood sugar problems etc. ‘Standard tests’ are often returned with a ‘normal’ result for M.E., so keep this in mind if you feel discouraged. It may still be useful to have some of the above tests done though, if offered on the NHS.)

Although the above tests are often requested by a local CFS/ME ‘clinic’ to be done before attending there, please note that our charity does not generally recommend the current NHS ‘clinics’ for CFS/ME as they tend to promote Graded Exercise and Cognitive Behavioural Therapy [which is often linked with increased exercise]. This approach usually worsens the symptoms of sufferers of true neurological M.E.

 

What tests can you try and get on the NHS?

  1. Virus test.
    As most (perhaps all) M.E. cases seem to be triggered by a virus, a viral test would be helpful to substantiate the onset of your illness. Again, this will depend on how willing your GP is. The main types of viruses which cause M.E. are enteroviruses (e.g. ECHO, Coxsackie). There is also an opinion that Herpesviruses  such as HHV6 (Human Herpes Virus 6) and other viruses can trigger M.E. as well.[1]Viruses can be difficult to show up in tests; for me personally, I had to have 8 months of regular blood tests on the NHS before an ECHO 2 virus was discovered. (I had a persistent GP, thankfully.)If a virus is not found, this doesn’t necessarily imply that the M.E. was not triggered by a virus. Did you have tender neck glands, sore throat etc. at the start of your illness? These could be symptoms of a virus.
  2. Blood test for Natural Killer Cells.
    M.E. sufferers tend to have a low number of natural killer cells. This blood test needs to be tested per cell for low NK cell cytotoxicity. [2]
  3. High Sensitivity CRP test.
    This is a blood test which can show up inflammation and infection. It’s recommended to have for M.E. patients by Professor Malcolm Hooper.
  4. IAG test.
    This is a urine test which determines a leaky gut.

 

Clinical signs to help diagnose M.E. on the NHS

  1. The Romberg Test:
    This tests for brain stem function.
  2. Tilt Table Test:
    This tests for circulating blood volume; it must be done professionally as a patient’s heart can stop. There is an alternative test called ‘a poor man’s tilt table test’ using blood pressure and pulse readings.

N.B.  Any test for an M.E. patient may cause a deterioration of their health, so must be done cautiously and professionally.

 

For more information on tests and clinical signs to help make a diagnosis of M.E., go to Jodi Bassett’s site at A Hummingbird’s Guide to M.E. www.hfme.org Go to the home page and click on M.E. tests. Jodi describes both scientific tests and physical signs on examination to help make a diagnosis of M.E. Again, sadly, the majority of the scientific tests may have to be done privately and not on the NHS.

 

Private tests

Unfortunately, more M.E. sufferers are feeling that they have to go privately for tests to help confirm their diagnosis of M.E. This is unfair for sufferers, as many tests could be done on the NHS but sadly the trend is for this not to happen.

Please see our page ‘Practical Guidance’ for more information of private tests from doctors such as Dr. Sarah Myhill (U.K.) who offers the Mitochondrial Function Profile Test; also Dr. Byron Hyde (Canada) who offers brain scans.

There is a private clinic in Kent known as The Celestine Clinic which some M.E. sufferers have found helpful. It uses a method called B.E.S.T. testing. (Bio Energetic Stress Test) which is an electrical testing method; this can show up weaknesses in the body, apparently. (Before considering this test, ask yourself if you have an electrical sensitivity as the test may exacerbate your sensitivity.)

Although some sufferers have benefitted from the endocrinological (hormonal) advice given by this clinic, it is rather unsettling from an M.E. sufferer’s point of view that a large hypnotherapy sign greets all patients at the entrance!

Web: www.thecelestineclinic.co.uk
Telephone: 01634 246413

The Celestine Clinic
Larkfield,
Maidstone,
Kent
ME20 6JA

 

Diagnostic Tests

Diagnostic tests (proving that someone has an illness) for M.E. do not exist on the NHS. There are several potential diagnostic tests, world-wide, which have been funded privately.

 

1)    The ATP Profile test

In the U.K., Dr. Sarah Myhill has worked on a mitochrondria test for M.E. called the ATP Profile test; this has been in conjunction with Dr. McLaren-Howard of Acumen laboratories and Dr. Booth. This test is offered via Dr. Myhill’s clinic (as part of the Mitochondrial Function Profile Test) and can be done through the post.

Web: www.drmyhill.co.uk

The ATP Profile test was published in a peer reviewed medical magazine, The International Journal of Clinical and Experimental Medicine (2009) 2, 1-16.


2)    The M.E./CFS H2S Urine Test

This has been worked on by Prof. Kenny De Meirleir’s from Brussels, Belgium. It detects amounts of hydrogen sulphide (H2S); an excessive amount may indicate a gut dysbiosis (i.e. wrong bugs in the gut). It appears that M.E./CFS sufferers tend to have a gut dysbiosis. The test can be performed at home, apparently, with a kit priced at around £13.
To obtain the above home kit, it looks as if it’s available from Protea Biopharma  www.proteabiopharma.com  (N.B. Let us know it you can or can’t obtain the home kit from them, as we’ve never ordered it ourselves.)

My personal opinion (and that of others) is that although this might be a useful piece of information for a sufferer, I don’t believe it is a diagnostic test as such because M.E. is a complex illness. Also, the test may indicate another bowel problem which is present other than in M.E.

This test may be preferable for an M.E. sufferer rather than a ‘breath test’ which can also be performed (sometimes on the NHS) to diagnose an overgrowth of bacteria in the small intestine.


3)   
Kerr’s work with gene expression

Dr. Jonathan Kerr, working from St. George’s University Hospital, London, has discovered since 2005 that CFS patients have different gene expression patterns compared to other illnesses and controls. This important work (once funded by the CFS Research Foundation, UK) appears to have been halted. There is promise that this work could be a diagnostic test for CFS. (Please note that this particular research is referred to only as CFS, rather than M.E. It is still important research, though.)


4)    SPECT scans (Single Photon Emission Computed Tomography)

The abnormality of SPECT scans for an M.E. sufferer appears to be one of the most hopeful as a diagnostic test. Indeed, some doctors are confident enough that this is already the case and has been for a long time.

SPECT scans have been shown to demonstrate low blood flow to the brain in areas unique to M.E. (distinguishing M.E. from depression).

Dr. Byron Hyde from Canada is a keen user of SPECT scans to help diagnose patients with M.E.

The same results with SPECT scans in M.E. patients has been found by both De Costa (1995) and Schwartz (1994).

Studies have shown that 80% of M.E. patients have abnormal SPECT scans. (See book Care for Someone with Severe Myalgic Encephalomyelitis, page 136,by Greg Crowhurst ISBN 978-1-4710-9889-5 available from Lulu publishers.)

It is extremely unusual to get a SPECT scan for M.E. on the NHS, although not impossible. Please also remember that the person interpreting the scan may or may not be trained to interpret it for M.E.

 

Please let us know if you do get any of the above tests on the NHS or if you manage to get other tests done, and if they have or have not been helpful. Thank you.

 

 

Compiled by Catherine Ashenfelter

[1] A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome 2006, by Dr. Byron Hyde pp.9,18. www.nightingale.ca Dr. Hyde believes that M.E. is almost always caused by enteroviruses, whereas other doctors widen the cause to other viruses.

[2] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners (popularly known as the Canadian Guidelines), Bruce Carruthers and Marjorie van de Sande, Haworth Medical Press 2005, page 18