MEA (UK) publish big survey of ME/CFS patients

Orla

Senior Member
Messages
707
Likes
1,457
Location
Ireland
From the ME Association Website

Results of probably the largest-ever survey of opinion among people with ME/CFS and their carers about what treatments and therapies work for them and what don't – and what people with the illness want from their health and social care providers – are available here for downloading. They are contained in a 32-page report published today by the ME Association.

The survey – carried out online and through a paper questionnaire by the ME Association in the summer of 2008 – attracted huge interest when the questionnaire was held open online for over four months. A total of 3,494 people answered the questions online. Another 723 completed the paper questionnaire after it was circulated with our quarterly ME Essential magazine.

The results will form part of our submission to the National Institute for Health and Clinical Excellence (NICE) when they review their current guideline on ME/CFS. NICE are expected to carry out the review later the year.

And they were part of our evidence submitted to the recent inquiry into the state of NHS services for people with ME/CFS in England carried out by the All-Party Parliamentary Group on ME.

A paper copy of the survey results is included with the latest issue of ME Essential, which is being mailed out to members tomorrow (Friday, 27 May)


http://www.meassociation.org.uk/ind...able-for-downloading&catid=30:news&Itemid=161
 
Messages
1,760
Likes
3,113
Location
Canada
mod-awful-in

Thanks for posting this! I'm also not surprised to see modafinil in the list of top 'treatments' that made people worse.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,920
Likes
4,320
Treatments for orthostatic intolerance(OI)? (e.g., POTS and NMH)

I didn't see any of the common treatments for chronic orthostatic intolerance on the survey but I might have missed them. I would have expected some reference to fludrocortisone, midodrine (ProAmatine), beta blockers, or even just salt tablets and extra water.

I don't know anything about the ME Association. Perhaps they don't think that orthostatic intolerance (OI) is common in people with ME? Perhaps the diagnostic criteria they are using excludes people with OI from having ME? I notice that the 2003 Canadian ME/CFS case definition specifically calls out "autonomic manifestations":

At Least One Symptom from Two of the Following Categories:

a. Autonomic Manifestations: orthostatic intolerance…neurally mediated
hypotenstion (NMH), postural orthostatic tachycardia
syndrome (POTS), delayed postural hypotension; light-headedness;
extreme pallor; nausea and irritable bowel syndrome; urinary
frequency and bladder dysfunction; palpitations with or
without cardiac arrhythmias; exertional dyspnea.

b. Neuroendocrine Manifestations: ...

c. Immune Manifestations: ...
(see http://www.iacfsme.org/Portals/0/pdf/CanadianCaseDefinition.2003.pdf )

I really hope it does not look like I'm criticizing. I think it's great that the ME Association did the survey!

I'm just curious about why symptoms/treatments for OI weren't listed or mentioned (or whether I missed them - very possible!). Or maybe they were in user comments but not in any of the multiple choice options?
 

Orla

Senior Member
Messages
707
Likes
1,457
Location
Ireland
ahimsa, I have not read the document yet (there was a smaller results report in the MEA Magazine some time ago which I did read). Most people in the UK can only access things like CBT, GET and anti-depressants, sometimes pain killers, but will not have gotten tilt-table tests, or know that they have orthostatic intolerance, or get most of the treatments you are talking about. So basically the lack of patients trying these things affects survey results.

Orla
 

ahimsa

ahimsa_pdx on twitter
Messages
1,920
Likes
4,320
Most people in the UK can only access things like CBT, GET and anti-depressants, sometimes pain killers, but will not have gotten tilt-table tests, or know that they have orthostatic intolerance, or get most of the treatments you are talking about. So basically the lack of patients trying these things affects survey results.
That is terribly sad news. I knew things were bad in the UK for ME/CFS patients but did not realize that they were that bad. The fact that autonomic dysfunction (NMH and/or POTS) is often found in both ME/CFS and Fibromyalgia is hardly a new or experimental finding. It would not have been included the 2003 Canadian definition (created 7 years ago!) if it were not something found in quite a few patients.

What if a patient has not yet been diagnosed with any illness? I actually got my tilt table test in 1995 before I had any diagnosis. If a patient in the UK has not been diagnosed with ME/CFS, and is having classic symptoms of orthostatic intolerance (difficulty with standing, dizziness, nausea, exercise intolerance, heat intolerance, etc.), can they still not get a tilt table test? Or at least try some of the treatments for orthostatic intolerance? Not all people with orthostatic intolerance are ME/CFS patients.

I understand that treatment for OI is neither a panacea nor a cure but it seems criminal to withhold a treatment that could help relieve at least some of the symptoms.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,045
Likes
6,039
Location
UK
@ahimsa

Within the NHS, patients are also very unlikely to be offered MRI scans (unless this is to rule out a brain tumour), chiari malformation, lumbar punctures or any test over and above the basic bloods that are run on anyone presenting with a not immediately identifiable condition.

When blood tests come back to the GP surgery, in many practices, there is a policy of not contacting the patient with the results unless something has shown up.

In my area, GP surgeries are not permitted to take bloods unless patients are very unwell or elderly. Everyone else has to cart to the nearest hospital (in my case 8 miles away) to have blood taken.

Appointments need to be booked in advance and early morning appointments for fasting glucose or cholesterol may have a waiting list of two to three weeks. When I first moved to this area, urine samples also had to be taken 8 miles to the hospital, but at least these can now be dropped off at the surgery for collection.

If it is decided you need a holter monitor (and that would usually only be for fitted for 24 hours) for a potential cardiac problem, a wait of two to three weeks might be anticipated and a further two weeks for the results.

Suzy
 
Messages
1,471
Likes
5
Location
UK
I also have heart stuff going on, which they could see on a holter monitor. The doc said eat more salt. Well that didn't work, but rest does.
 

Dolphin

Senior Member
Messages
17,555
Likes
28,233
But people with ME/CFS in England have probably the best access to CBT therapists in the world.*

Personally, I never thought having NICE guidelines at this stage was the way to go. I'm not sure what treatments thought would pass as both being evidence-based and would also satisfy NICE's strict value-for-money requirement.

* using this for effect - perhaps there is a country that is "better"