CFS Survey 2017: What does a CFS protocol look like?

cfs_survey

 

It is clear that the Chronic Fatigue population are doubly shafted; first, by their symptoms and secondly by the lack of accurate information provided. Most advice is given on what ‘should’ occur, not what happens in the severely dysregulated. I know from previous surveys that, by the time an individual comes to see me, they have been to an average of 7 practitioners previously. So this is a population that is clearly not responding the way they ‘should’, making it near-impossible for practitioners to make predictions on what they’d suggestion or the expected response until they have actually committed to a course of treatment. In other words, the CFS population normally need to spend many hundreds of pounds and invest several months just to know if they’re wasting their investment or not.

The primary purpose of this survey is to help those individuals who are considering paying for my services. However, I hope it will also provide a better frame of reference for the CFS community at large; to shine light on what solutions are delivering the best results and also to help set realistic expectations.

I decided to track the progress of 28 individuals that came to see me in August/September 2016, tracing their progress in the 10 months that followed (I had planned to track 30, although 2 individuals in that time were athletes and therefore I felt it inappropriate to include them in this analysis).

 

Q1. How long will it take to get well?

This is the question I get asked most often in the early stages of treatment. It is also the hardest question to answer. This is for several reasons:

  • There are many variables in your metabolism that we do not yet know. For example, we may know that you are low on carnitine from your initial test results, but we won’t know how your immune system will function after we correct this (more information here)
  • There are many variables in your life. I don’t know if your neighbours are about to set up a heavy metal band that conduct late-night practice sessions, or whether your children will develop a toothache. Will you be placed under pressure at work next quarter? Will you be subject to a broken boiler, a break-up or bereavement? We cannot predict these things.
  • Everyone has a different idea of wellness. I have worked with many that only ever dared to dream of feeling ‘OK’. They have often considered the process finished when I have felt there are several steps to go.

For this latter reason, I have not included figures on reaching the finish line, but instead divided responses into three groups:

  • No response, or little response. We may have seen some measurable changes, but not enough to consider any symptoms ‘gone’ and certainly no meaningful change in wellbeing. This group are listed in red.
  • Moderate response. In this category, we see individuals who have seen their sleep improve, seen their digestive movement change (eg. no longer constipated) or other symptoms disappear… but do not feel dramatically changed overall. This group are listed in yellow.
  • Significant response. This relates on to anyone reporting that they ‘feel much better’, ‘totally different’, ‘more like myself again’, or similar. This group are listed in green.

CFSS_jul17_figure1

The figures:

  • Of the 28 individuals tracked across the, 27% showed little or no response after the first round of recommendations. However, this figure dropped to just 6% after three appointments and ZERO after six appointments
  • Of the 28 individuals tracked, only 18 prevailed to report back on their progress after 3 appointments and there were only 8 individuals left by six appointments
  • The single most likely course was moderate improvements after the first appointment, which turned into significant improvement after three appointments

Clearly, results don’t happen overnight. But a lack of response on the first round bears little significance for an individual’s likelihood of success.

Does this mean that anyone who attends six appointments is guaranteed an improvement? No. We should remember that these responses were seen in one group and that this sample size simply isn’t large enough to make such sweeping statements. I have done this for 12 years and I can think of a significant number of individuals who had not turned the corner after six appointments.

Equally, we need to consider a ‘survival bias’. In this group, only 8 individuals continued with treatment beyond six appointments. No doubt some of the absent individuals considered themselves ‘fixed’ and thus had no motivation to continue, but we must also consider the likelihood that some individuals chose not to continue because they felt the results did not justify the continued effort/expense.

I intend to run a similar study before the end of 2018 and will attempt to shine more light on those that disappeared early (ie. who did so because they were particularly happy, and who did so because they were not). I also hope to see a higher percentage of individuals reaching a state of ‘significant’ improvement by six appointments; 75% is good, but there is room for progress.

 

Q2. What’s your protocol?

Again, not a question that I can answer unless I know what ails you. I do not have ‘pet protocols’ or favourite nutrients. There is only what works for you and what does not, which is why I insist on the Organic Acids test as a bare minimum before we begin.

My protocol is therefore to identify your personal obstacles, then to eliminate them… and while the protocol itself can get quite complex, the rationale for it is simple.

Below is a breakdown of the frequency at which I see different categories of adrenal function and the frequency at which I see common problems. These figures relate only to issues that have been confirmed through laboratory testing or proven clinically.

So how often do we find the common issues?

CFSS_jul17_figure0

Figures:

  • Hyper-adrenal output was more commonly found in this group than hypo-adrenal output (three times more common)
  • Oxalate issues were the single most common ailment (96%), followed by dysbiosis (89%)

Most people are surprised when their adrenal output comes back as high upon testing. However, this is surprisingly common in the most ill patients (remember, “high” output may not be sufficient when your requirements are “stratospherically high”) so I was not shocked to see this.

Although oxalates are very common, it was a surprise to see that nearly all the individuals in this group showed oxalate issues.

One thing we can take from this is the inter-connected nature of metabolic problems; in other words, obstacles rarely form in isolation. We can expect most individuals to have multiple obstacles (eg. based on the data above, the mathematical likelihood of someone with biotoxin issues not having any of the other obstacles listed is 0.0032, or one in 3,000).

This is an important paradigm to take on board, as I regularly find myself explaining this to incoming individuals who had previously been searching for their “problem”, finding no relief from the thyroid lady or the SIBO guy. Many have been dismayed and worried to discover that there is a lot more going on than they thought. There is no need to worry. This is normal for me to see.

Finally, I also tracked the frequency of lectin problems, finding this in 71% of individuals who trialled the low-lectin diet. I did not include it in the table as I felt it was misleading; because of its difficulty, I tend to suggest this diet only when the individual is not improving at the rate I’d like to see (thus, those that attempt this diet are already a self-selected population, and one much more likely to have such issues). I estimate around 30% of people I see have lectin issues.

 

 

Q3. How many appointments will it take? And how often do I need to see you?

 

Again, this is different for everyone. As we’ve seen above, many individuals do not pursue my recommendations all the way to ‘the finish line’. And I have no problems with that, providing that they too are happy with their health and wellbeing.

The below graph charts the average regularity of appointments in the 10 months since these individuals were enrolled.

CFSS_jul17_figure2a

Figures:

  • The second appointment was held, on average, 1.8 months after the initial consultation
  • The third appointment was held after 3.8 months, the fourth after 6.2 months, the fifth after 7.7 months and the sixth after 8.5 months

What we can take from these figures is that, if you were to be the mythical ‘average individual’, then you would complete your third appointment after 3.8 months and have a 61% chance of feeling ‘significantly’ better. Or you would complete your sixth appointment after 8.5 months with a 75% chance of reaching this milestone.

It’s worth pointing out that these figures include the average generated by data from real clients in the real world, only some of which fully adhered to my recommendations. I would rarely recommend to leave more than a month between follow-up appointments, at least not in the first few months (where the protocol is typically most challenging). Those fully adhering to the recommended schedule may therefore reach these milestones quicker.

It’s also interesting to see that the average gap between appointments drops the further down the journey we go. This is not surprising, as we again see evidence of survival bias. Of the 28 individuals that begun the journey, 36% had already left by the third appointment, leaving behind them a population with better motivation/adherence than average.

 

Q4. Will you change my diet?

Of course, this is another question that is impossible to answer without knowing what you are currently eating and what obstacles you are facing. These are both things I can expect to know at the end of the first consultation. However, I appreciate that dietary change can be a challenge for many and so they want to brace themselves before enrolling.

I’ve therefore looked at my recommendations and divided them into three key categories:

No change – literally keeping with the existing diet.

Moderate change – for example, adding snacks where there were none, changing the times of foods, using the same sort of meals but altering quantities.

Major change – exclusion diets, totally different eating habits.

CFSS_jul17_figure4

 

Q5. How many supplements will you suggest?

Supplements are based on your need. There are no items that are recommended as a matter of course, only those indicated from my investigation (eg. the results of your Organic Acids tests and clinical screening).

Below I have compiled figures on the number of supplements I recommended the individual purchase following the first consultation. Therefore this relates only to new supplements (not to items that they were already taking prior to seeing me and continued to do so).

CFSS_jul17_figure6

Figures:

  • Of the case group, the lowest number I recommended was two new supplements. The highest was nine
  • The average (mean) number of supplements I recommended was 4.8 per individual

Yes, I make use of supplements. I often hear people talking about ‘healing with whole foods’ and this does indeed sound wonderful. The only problem being that its dogmatic. And, having worked with over 2,000 individuals, I am yet to see an individual reach the finish line without suitable supplementation. Of course, the irony here is that the CFS population struggle with supplements generally, although this has rarely the case when the reasons behind poor tolerance have been dealt with (data and experience are key here).

Besides the emotional dissonance for wishing to avoid heavy supplementation, there is also the cost. I ran a quick calculation on the monthly cost of the five supplements I most frequently recommend on the first consultation (which are Biocare Multi Mineral Complex, Higher Nature Ultra C, Solgar Biotin, Swanson P5P and Natures Plus Magnesium) and the monthly cost hits £36.27 per month.

I hope to provide more precise figures when I next redo this survey, but it’s important to point out that most people see their number of supplements increase in the first few months (as we get back results of the Adrenal Stress Index, etc), before decreasing from the six-month mark onwards.

The bottom line is that: candidates should be prepared to for supplement recommendations and it would be wise to earmark around £50pm towards this.

 

Q6 How many tests will I need?

Tests are the foundation upon which I tailor my recommendations and gauge the effectiveness of each intervention. They eliminate guesswork, differentiate one client’s needs from another and allow us to predict your trajectory. However, they do cost money.

I ask all incoming individuals to take the Organic Acids test before the initial consultation. Equally, all incomers should be ready to cover a general biochemistry and a comprehensive adrenal testing, and I strongly recommend (but do not insist on) the genetic panel from 23andMe. These four tests hit a grand total of £520. I am under no illusions that this is a lot of money, although the value is clear; the information we yield saves several consultations of guesswork, several months of deduction and multiple purchases of speculative supplements. In short, every individual that pays for these tests saves money by doing so.

Of course, that is of no consolation for anyone who simply cannot find the funds and that that is why I have tried to provide a fair run-down of what an individual may expect to shell out so they know if it is realistic to start upon this course.

Given that all individuals are expected to undertake the ‘core’ tests mentioned above, I have not included them in the data below. Instead, these figures refer only to additional tests above those outlined above.

CFSS_jul17_figure5

Figures:

  • In the 10 months following the initial consultation, the average number of additional tests was 1.39 per person
  • The single most common additional test is now the DUTCH test (£224)

Together with consultation fees and supplements, tests stand out as the third major outlay in the quest to get well.

It’s worth mentioning that these figures do not include tests run by the individual’s own NHS doctor (eg. covered by the NHS), and therefore relate only to those tests ordered privately and paid for by the individual. This may be relevant for those whose GP is unsupportive or unwilling to aid them in their journey. Or, to put it another way, your outlay may be higher if you do not have a helpful GP.

As with many areas, it can be impossible to provide accurate figures ahead of time in regards to how many tests will be required (after all, we never know if we will ‘unmask’ imbalances when we bring metabolic pathways back to life). However, it seems reasonable to earmark around £800 for testing in the first 10 months; this is a reasonable estimate to cover:

  • the preparatory tests ahead of the initial consultation
  • the ‘core tests’ in the early stages and
  • some more reactionary tests once the journey is in motion.

 

Q7. Is there anything else I will need to do?

If you present yourself to an acupuncturist and describe your poor health, guess what type of treatment he will suggest? Equally, it requires little imagination to say what type of intervention a chiropractor may recommend in similar circumstances.

I am keen that we not enforce similar limitations when applying my approach. What the last 2,000 individuals have shown me is that some need additional, non-nutritional help and others do not. When I spot the need for this, I will suggest that you seek the appropriate help.

Looking at my records, there are only three avenues in which I need to regularly outsource. These are to handle postural issues (via chiropractor or osteomyologist), to resolve neurological tension (via Tension Release Exercises or similar) and referrals to doctors for bioidentical hormones (occasionally other medications).

Here’s how often I made these referrals in this 2016 group:

CFSS_jul17_figure7

Figures:

  • Are there any figures here?
  • Not only was postural correction the most likely modality that I outsourced (57%), it was also the most expensive

I have not tracked the exact amount of chiropractic adjustments that each client had when embarking down this course. Neither can I guarantee the price paid to the practitioner. However, the single most common practitioner that took on my referrals was a chiropracter in Putney and they charge £425 for a block of 12 adjustments.

What I do know the most common charge for undertaking the TRE technique was £55 for attending a single workshop. Those individuals who needed to arrange a private appointment with a knowledgeable doctor can expect to pay £130 (again, a cost that will be entirely saved if your NHS doctor knows their stuff and is happy to help).

Of course, there is huge variation here between one client (and yes, most clients will be crossing their fingers that they do not need postural adjustments!). But, using these most common outlays and the likelihood of needing each approach, the average spend on ‘external’ practitioners is £294.10 in the first ten months (although it is rare to ever refer people out after the first few months).

 

Q7. How much will it cost?

The second most asked question, and one that all previous questions naturally lead towards. I’ve based this calculation on being the average individual (of which no-one is). However, if you were this mythical ‘average’ individual and followed the patterns recorded in this group of 28 people with CFS, then your outlay would be:

  • £933 on consultation fees (assuming six appointments, whereby two follow-up sessions required additional time and that you received 10 minutes of email guidance per month)
  • £500 on supplements
  • £800 on laboratory tests
  • £294 on external practitioners
  • £2,527 in total over 10 months
  • This outlay would see you with a 25% chance of feeling moderately better and a 75% chance of feeling significantly better

 

It’s difficult to rationalize this when seeing it in black-and-white. I have mixed feelings about providing such a figure, knowing that no one individual has ever been entirely average and therefore this figure cannot ever truly capture the individual nature this journey or what challenges and costs you will face on yours.

Of course, you may need less time and less tests. You may need more. You are equally likely to be in the 14% of individuals who turn the corner on the first round of recommendations, as you are to be in the 6% of individuals who see little change after three rounds.

Finally, it is important to point out that this survey tracks individuals for the first 10 months only. This is the timeframe in which we would expect to see individuals significantly better (in 75% of cases, according to my observations from 2016-17). This means ‘well on their way’ but rarely at the finish line. This means ‘thereabouts’ but not ‘there’. It is true that many individuals already consider their journey complete and enjoy their lives once again. Equally, many who were unable to work now do so (some part-time, some full-time). But I am keen to emphasize that there is normally more work to be done to reach the finish line, ie. to go from ‘decent’ to ‘great’.

Therefore, this information on timescales, responses and costs should be considered a guideline on what it takes to reach a state of stability (to ‘get out of the woods’), rather than on achieving truly optimal health. This second phase is a different concern altogether; much more predictable and steady, much less urgent and intense.

Putting a black-and-white figure out there begs a very obvious question: what can be done for those individuals who do not have sufficient funds to engage in this protocol? There are two options here: a) attend a low-cost workshop as a way to get started or b) speak to practitioners who can provide a compromised approach. I am in the process of training a small army of practitioners via the academy, and I am compiling a list here of those that have both passed modules and have regular contact with me. While we must understand that any compromises in the above approach will inevitably come at a cost to progress, it is still realistic to achieve progress…